April 6, 2020 -- When Joan’s 94-year-old mother got sick in mid-March with symptoms of the new coronavirus, her family called an ambulance to rush her to the hospital. But as they prepared to follow the ambulance to the hospital, paramedics in full protective gear broke the news: The hospital was no longer allowing visitors to go with patients inside in an effort to reduce the spread of COVID-19.
So Joan’s mother went to the emergency room, and then on to the intensive care unit, and she never came home. Joan, who asked that her last name not be used, says her mother spent 6 days in the hospital, sick and alone, before dying of respiratory problems linked to the coronavirus.
“We never got to see her again. That was it, and not being able to say goodbye to her was brutal. That gutted us,” says Joan, 61, of Illinois. “It’s not like we left anything unsaid. She knew we loved her. … Between family and a caregiver, someone has been with her every minute the last few years. So the fact that at the end of her life, she was scared and alone and asking where her family was, and we couldn’t be there, was beyond heartbreaking. It felt like we were dropping the ball and failing her when she needed us the most.”
Communication Challenges During the COVID-19 Crisis
Hospitals and many doctor’s offices across the country have had to make drastic changes to their visitor policies because of COVID-19 and how contagious it is. Guidelines from the CDC now recommend banning or severely limiting visitors at health care facilities, with only a few exceptions, to reduce the spread of the virus to patients who are already vulnerable and to hospital staff.
“You will find that in general, it is a no-visitor policy at most medical centers with the following exceptions: If it is a hospitalized minor, you are typically allowed one adult family member or guardian. If it is a patient at the end of life, some ICU settings may allow one or two in the room if it’s not a coronavirus case,” explains Bret Nicks, MD, an emergency room doctor at Wake Forest Baptist Medical Center in Winston-Salem, NC.
While the policy is understandable, it is setting up a variety of challenges for many families who can’t be with loved ones or communicate with their doctors and nurses during these challenging times.
“I understand the precautions and agree with everything they are doing, but it’s still hard,” Joan says. Her brother followed the ambulance carrying their mother to the emergency room and sat in the parking lot for hours -- in case doctors changed their minds and decided a family member could come in. But they never did.
Once her mother was admitted, Joan says, she tried to call the ICU nurse’s desk once for an update, but staff said they were too busy to field frequent calls. They instead asked her family to choose one person as a point of contact, and they called that person a few times a day with updates. Hospital staff did grant the family’s request to send the hospital chaplain to bless her mother through the window of her ICU room before she died, and they arranged for Joan’s mother to have one phone call from her ICU room with each of her three children before she was no longer responsive.
“I feel like only a mother can pull themselves up for that last word, and she did. That was a real gift, but overall, the whole process was really frustrating and hard. I get it. They had so much going on, and I think they did the best job they could. The rules are what they are. But it was still really hard,” Joan says, choking back tears.
Beyond the emotional toll this can take, there is a practical challenge, too. Many families like to have someone with a patient at the hospital or doctor’s appointment to take notes, talk to doctors, understand treatment options, and advocate for the patient. This can be especially important when a patient is elderly, sick, confused, in pain, doesn’t speak English as a primary language, or can’t speak well, advocate, and take notes themselves.
Diana Reiniger of Virginia has been going to every appointment with her 73-year-old husband, Geoff, since he got open-heart surgery at the beginning of March. As his primary caregiver, she takes notes and talks in depth with the doctor to understand all treatment recommendations. But 3 weeks after her husband’s surgery, when they went for a follow-up appointment, she was surprised not to be allowed in the building with him.
“We got to front door, and they said that I could not come in -- only the patient. It was a moment of, ‘Uh, OK.’ But I am the note taker and the care provider. They said they were sorry, but it was the new policy and they couldn’t do anything about it,” Reiniger says. “So Geoff called me from inside the office when the doctor came in to see him, put us on speakerphone, and I listened and took notes that way.”
Reiniger says it was not ideal, but she understands that for now, it will have to do. “It was difficult. You can’t have a conversation, ask questions, and get answers back and forth as easily as you do in person,” she says. “I get it and understand why we have to do it this way, but it’s still really tricky.”
Easing Communication with Health Care Providers During COVID-19.
Joan says her family’s case was complicated because she and her brother got the new coronavirus, too. They didn’t have to be hospitalized, but both were very ill. “We were both sick and feeling terrible, so we weren’t thinking straight. I felt like I couldn’t string two words together, so now I ask myself, ‘If I could do it again, what would I do differently?’” Joan says.
Experts say it is far easier to figure out how you want to respond to a crisis before it happens, rather than in the midst of it. Here are some tips and best practices to communicate with hospital staff if you can't be there.
Put an action plan in place before you need it
Think in advance about who has the reliable and consistent ability to communicate. A parent of a toddler, for example, might not be the best choice.
“With the time spent putting on and taking off personal protective equipment, nurses, providers, and staff are often tied up in patient rooms,” explains Kiersten Henry, DNP, chief advanced practice clinician at MedStar Montgomery Medical Center in Olney, MD. “Designating one person to be the point of contact minimizes multiple phone calls from the same family. If there is a health care provider in the family, that person is often a good support to the spokesperson and could be involved in these updates.”
She says phone and video chats are becoming a critical tool for nurses working to come up with ways to communicate with families amid this crisis.
“As many of our critical patients are intubated on a breathing machine and sedated for their comfort, we place the phone next to their ear so families can talk to them, even if they are unable to respond,” Henry says.
Her hospital is also using FaceTime, Skype, and Zoom on tablets repurposed from administrative staff, equipped with childproof cases that can be wiped down between patients. Patients not on mechanical ventilators can use the same technology to connect with families and for families to speak with nurses and their loved one’s care team.
“We call this a virtual visitor,” says Nicks, the emergency room doctor. “You aren’t present, but you can see me and I can see you and we can have a conversation.”
“It’s the best possible way to allow for families to feel present and engaged when their physical presence is not allowed. You can’t hold your loved one’s hand, but you can see them, have a conversation when possible, and at least visibly be present.”
Nicks says not all hospitals will be able to do video chats, but many will if possible. Henry says before COVID-19, families were encouraged to take part in daily rounding in the intensive care units. So now, many hospitals are working on ways to include families in daily rounds via video conferencing.
Have a ‘go bag’ to send to the hospital
Joan says the main thing she wishes she had done differently for her mom is pack a “go-bag” to send with her in the ambulance. She says she would have put a communication device -- like a phone or iPad -- in there, along with a charger. She also thinks it could have been nice to send a photo of the family that her mother could have held or looked at during challenging or sad moments.
“I wish we had thought to send her cellphone, but when the ambulance came, she was in really bad shape and we didn’t stop to think it through,” Joan says. “If we had done that, I think there were so many times in the ER, and even early on in the ICU, when she could have called us more easily.”
Henry says you can pass other information to nurses, too. “Share with us about your loved one if they can't speak for themselves. What kind of music do they like? What are things about them that would help us customize our patient care? Help us get to know your loved one as more than a patient in a bed -- their profession, hobbies, etc.,” she explains.
Know how to follow up
In the best-case scenario, your loved one will be released from the hospital, and it’s important to understand the diagnosis, treatment recommendations, and suggested follow-up. They should be given an end-of-visit summary that includes tests performed, medication given, diagnosis, and recommendations for care.
In most cases, Nicks says, the ER doctors will recommend you follow up with your primary care doctor.
“If you have follow-up questions after the visit, you can try to call the emergency room. But recognize that the doctors and nurses who saw your loved one work in shifts and likely won’t be there when you call.”
If you don’t have a primary care doctor, ask for some names to follow up with before you leave the hospital. If the doctor you follow up with is part of the hospital in your community, they should be able to see all information related to your visit. If not, you may need to request your medical records from the hospital.