If nurse Joseph Falise could impart one tip to those with a loved one in the hospital nowadays, it would be to call ahead and confirm the visitation policy. Most hospitals still have tighter pandemic-related rules throughout their facilities, not just on covid wards. At University of Miami Hospital and Clinics, where Falise works, for example, only one visitor is permitted per day. When other family members or friends show up, he said, “It’s like a surprise attack when we say, ‘I’m really sorry, but you can’t come in.’”
Nearly two years into the pandemic, keeping up with visitor restrictions is one more stressor for already anxious friends and family of hospital patients. In addition to limiting visitors, some hospitals have shortened visiting hours, restricted visitors to one for a patient’s entire stay, and closed lobbies and other public places. (Some loosen certain restrictions if a patient is in hospice care.) Some hospitals also require all visitors to be vaccinated.
The University of Miami hospital’s policy has changed numerous times throughout the coronavirus pandemic, said Falise, the nurse manager in the cardiovascular and neuroscience ICUs. And “there’s a hospital across the street that's doing it differently than we are.”
There is no standardized visitation policy for hospitals in the United States. Restrictions on visitors are typically determined by the hospital’s administrators and patient family advisory council, said Robyn Begley, senior vice president of the American Hospital Association and CEO of the American Organization for Nursing Leadership. “The safety of the patient, safety for visitors and family members, and safety to the staff are always factors” that influence policies, she said.
“On top of that,” she added, “there’s local government mandates right now. So, there are safeguards that every hospital examines in the determination of what their visitation policy is, and it gets revisited depending on what’s happening regionally.”
Throughout the pandemic, some experts and patients have pushed for less restrictive visitation policies. A study published in April in the Patient Experience Journal found that quality of care suffers when hospital visits are limited. The researchers hypothesize that a lack of advocates might lead patients to feel less acknowledged in their care, and the lack of third-party observers could lead to less safe care.
“Families of patients serve two roles: emotional and as an advocate,” said Anthony C. Stanowski, a study co-author and president and CEO of the Commission on Accreditation of Healthcare Management Education. Visiting family members “are the best source of patient information and patient comfort, and have a vested interest in the well-being of the patient,” he said.
Falise said he has supported open visitation in the past, “because having your family members bedside has been proven to decrease mortality and increased patient satisfaction.” But, he added, “Hospitals are really good-intentioned on this. The reality is, we have to adjust to the times.”
Here are some tips for visitors dealing with covid-era hospitals rules and advice for being the best advocate possible — especially if that responsibility falls entirely on one person.
If it’s a planned admission, have a serious conversation ahead of time. Find out the hospital’s visitation policy by calling or checking its website, Falise said. You can then have a discussion about who will be the primary visitor and set expectations by letting other family members know. This is also a good time to find out “exactly who among the family the patient would want to have information shared with,” said Nancy Foster, AHA’s vice president of quality and patient safety policy, and whether they have an advanced directive that stipulates what type of medical measures they would want.
Expect to wait. All visitors need to be checked in, and it can take some time. If you come at the beginning of visiting hours you might find yourself in a long line outside the hospital.
Prepare in advance for talks with the doctor. Have questions written down, so you’re not caught off guard when a doctor comes in, said Kati Kleber, a nurse educator based in Urbana, Ill. and author of “Admit One: What You Must Know When Going to the Hospital, But No One Actually Tells You.” Keep a running log of questions as they pop up; you could even store them in a Google doc accessible to family members who are unable to visit. If you want another person to also hear the doctor’s updates, “you can always call and put them on speakerphone,” Kleber said. “However, I recommend giving family members a heads-up to be near their phone and ready to answer if you call,” because provider schedules are unpredictable, and you won’t be able to plan a specific time.
Some hospitals, such as University of Miami, have teams of nonclinical workers who act as a liaison between patients and their families, passing questions to the doctors and information to loved ones at home.
Ask about proxy access to the patient’s medical records. At Cleveland Clinic, a patient’s loved ones can be granted proxy access “so they can see what’s going on with test results,” said Stephanie Bayer, the hospital’s senior director of patient experience. “It’s the same point of view you would see if you were looking at your own record, and it helps keep people informed.” Ask a nurse to walk you through the options, and note that the patient will need to approve this access.
Get in touch with the hospital social worker. Advocating for a loved one in the hospital will almost definitely be confusing and overwhelming, said Ivelyse Andino, founder and CEO of Radical Health, which helps people with issues such as understanding health care rights. She suggests seeking out a social worker or patient navigator, who are professionals “provided by the hospital to help connect you with resources and support.” These folks can help you make sense of treatment options and prepare an at-home discharge plan, plus ensure you don’t burn out while caring for your loved one.
If you can’t visit, find other ways to show a patient you’re thinking about them. “There’s text, there’s FaceTime, there’s Zooming,” said George F. Blackall, a pediatric psychologist at Penn State Health Children’s Hospital in Hershey, Pa. “Offering to connect in that way is really helpful, particularly with adolescents.” Prioritize silly or lighthearted messages that might spark a patient’s first laugh of the day.
Gifts are almost always welcome, so long as there’s enough space in the room — just check first with whoever is spending time there. One idea: You could present the patient with a digital photo frame; “people just need the email address, and they can send photos that rotate on the display,” Kleber said. That can help brighten a patient’s days and remind them of those they’ll hopefully see soon.
If you’re visiting a senior, it’s especially important to advocate. You’re an essential part of your family member’s care team, said K. Andrew Crighton, an advisory board member at Family First, which offers caregiving benefit plans for employees. Let the doctors know if a patient has a hearing, visual or cognitive impairment, he said, in which case “your role becomes more critical.” (Sometimes visitation exceptions are made in those situations.)
Follow the rules. Whether it’s wearing a mask, practicing social distancing, leaving at a certain time, or not roaming the halls or loitering in the lobby, do what the hospital asks, Bayer said. Flouting the rules is not helpful to anyone. And don’t take out your frustration on the staffers who must implement a policy they did not draw up.
Be kind. Hospitals across the nation are dealing with staffing shortages. “This is a very challenging time for all our clinicians,” Begley said, calling for “a little extra patience.” Speaking of which: Say thank you. There’s no need to send the health-care team a gift, but “taking a minute to say, ‘I see you and appreciate the work you’re doing’” goes a long way, Bayer said. “It helps when people notice that we’re working hard.”
If you’re not able to visit, help out in other ways. During the pandemic, it’s likely that only one or two people are doing most of the visiting. You can help by doing grocery shopping, bringing them meals, offering to drive them to and from the hospital, and taking care of what needs to be done at the ill person’s house. “Things like walking their dogs, cleaning their house, doing laundry and paying for their parking can go a long way,” Kleber said.
Consider setting up a website to keep others informed. There are lots of “really great communication tools,” like CaringBridge, that allow friends and family to document a loved one’s health journey, Bayer said. These sites are typically so easy to use that they don’t add much stress to a patient advocate’s life, she notes — plus, someone other than the primary visitor could be designated to post updates.
Take care of yourself. Spending long days advocating for — and worrying about — your loved one will inevitably take a toll. “One of the things people forget to do is take care of themselves,” Bayer said. “So that means make sure you’re sleeping, make sure you’re eating. We need to keep ourselves resilient.” Many hospitals offer some form of spiritual care, she adds; seek it out if that would be helpful to you. And know that what you’re doing is important. “We recognize that family members are vital components of the patient’s healing,” Bayer said. “The love and support that patients get from their family and their visitors does help them and motivate them and keep them on the track of progress.”
Angela Haupt is a freelance writer and editor. Follow her on Twitter: @angelahaupt.