How to Advocate for a Family Member Hospitalized with COVID-19

  • Family members are having to learn how to be patient advocates when they aren’t allowed to visit loved ones with COVID-19 in the hospital.
  • Experts say phone calls and video chats are the best ways to stay in touch with a hospitalized relative.
  • Experts say it’s important to designate one family member to be the point person to talk to doctors.
  • They add it’s also important to figure out who’s the medical “quarterback” overseeing care for their loved one.

During the COVID-19 pandemic, the focus has been rightfully on the people who are in hospitals on a long-term basis, whether it’s for COVID-19 or other reasons.

However, there are also family members standing outside these facilities who can’t visit their loved one because hospitals are barring visitors in an effort to contain the spread of the new coronavirus.

For them, it might be difficult to know how to properly advocate for their family member when resources are strained and you can’t be at a patient’s bedside.

Dr. Chris Worsham, a pulmonary and critical care specialist who’s been working on the front lines at three Boston-area hospitals, says it’s difficult for family members to hear that they can’t visit a loved one.

“Nobody likes the idea of a family member being alone in the hospital, potentially on life support and needing a breathing machine,” Worsham told Healthline.

“It’s understandable that occasionally family members would be quite upset at the situation, and we try to let them know that we wish this wasn’t how it had to be. It’s our duty to make sure patients are cared for and as comfortable as possible, so we try to reassure family members that we’re doing our absolute best,” he said.

Kay Van Wey, a personal injury trial lawyer and patient safety advocate in Dallas, told Healthline that hospital-acquired conditions (HAC) are a bigger concern than ever in the midst of the pandemic.

“HACs are prevalent and were a problem before we were hit with a pandemic,” she said. “Now, the resources are fewer, staffing is shorter, new teams are working together, healthcare workers are exhausted and stressed out. So, the situation is ripe for even more preventable medical errors to occur.”

What it’s like on the front lines

Dr. Maxine Dexter, a pulmonary and critical care physician taking care of COVID-19 patients in Oregon, described current conditions on the front lines as “exhausting, unnerving, and stressful.”

“We need to minimize staff interacting with the patients with COVID-19. We minimize interaction to protect staff,” she explained to Healthline. “These patients are scared, alone, and isolated much more than is normal. This is hard on our patients, their families, and the care team. None of us feel good about this, and yet we believe it is necessary to protect our healthcare workers, and ultimately, our ability to care for the population.”

Adding to the stress is the fact that, with a new, unpredictable virus and overloaded hospitals, there’s more uncertainty than medical professionals are accustomed to.

“We are data-driven caregivers who try to do the right thing based on experience and scientific investigation. The data we have are getting better, but it is far too limited to declare anything ‘standard of care,’” Dexter said.

“Each and every one of us is balancing all of this uncertainty at work with the parallel stress that is happening at home. Can we safely be with our families at home? Do we have the infection and don’t know it? That is where the exhaustion comes from. There is no true ability to refill our emotional tank,” she said.

Worsham told Healthline that the current situation in Boston is fast moving and dynamic, and that it can be tough to adequately describe what it’s like to be working in a hospital right now.

“This past week I was at home, but the week before I was deployed in a COVID-19 intensive care unit (ICU) and I go back in tomorrow,” he said. “What we might be experiencing now in Boston is different than in New York City or in a rural hospital, and the situation here may be completely different in a week.”

He explains that the crunch can be attributed to the fact that so many patients have the same symptoms — acute respiratory distress syndrome (ARDS) — and therefore require the same potentially lifesaving equipment.

Compounding the problem is the shortage of personal protective equipment (PPE) available to doctors.

“While [ARDS] is a routine condition that ICU doctors treat every day, we don’t often have ICU after ICU completely full of these cases,” Worsham said. “To conserve personal protective equipment, we are wearing masks as long as we can safely wear them. I probably clean my hands a hundred times a day.”

While barring nonessential personnel from the ICU is a necessary step, the lack of family members and patient advocates in the ICU presents its own issues.

“Under normal circumstances, we generally find it best to talk with families and update them in person. Oftentimes they will bring in photos of the patient to show who they are when they are well, which helps us connect with our patients,” Worsham said.

“We also are used to having difficult conversations when patients aren’t doing well, and again, under normal circumstances we would do that in person. So we have a lot of challenges having to do everything over the phone or video call,” he added.

How to be an advocate

As it stands now, it probably won’t be possible to simply visit loved ones in the hospital for the foreseeable future.

“Family members and other visitors are not allowed into the rooms of patients with COVID-19 infection,” Dexter said. “This is distressing for everyone and is one of the most gut-wrenching parts of this pandemic. Having a patient die without family at their side is bad enough, but when those family members are desperate to be there and cannot be, it’s excruciating.”

During the pandemic, many people in self-isolation are using phone calls and video chats to touch base. Experts say this is the best method for staying in touch with someone in a hospital as well.

“A phone call may be their lifeline and your only means of communication with them,” Van Wey said. “If the patient is able to communicate with you, encourage them, and remind them to call you often to check in, and to call during critical times, such as anytime a doctor comes in to make rounds on them or anytime a new medication or new test is ordered.”

Van Wey also suggests creating a communication plan from the outset and figuring out who’s the medical “quarterback” in charge of monitoring a loved one.

“In a case where many specialists are involved, ask who the ‘quarterback’ is,” she said. “Typically, this is a specialist, such as hospitalist, critical care medicine doctor, or intensivist. If you are unable to speak with each physician who is consulting on your loved one’s case, at a minimum you should be able to speak once or twice a day to the ‘quarterback’ in charge.”

Worsham also suggests reaching out to loved ones in the hospital on their personal or room phone. He says these check-ins are good for morale.

“Recognize that they’re probably going to be sleeping a lot, but that they also would probably be happy to hear a familiar voice or see a familiar face, even on a screen,” he said.

Dexter advises family members to designate one person to be the designated contact for hospital staff.

“In our facilities, we encourage families to designate one primary contact for the hospital who can call anytime to get updates and ask questions,” she said.

“The treating primary physician will call the primary contact at least once daily. The hardest thing for hospital staff is when families are not able to organize around one contact, as getting multiple people calling throughout the day is disruptive and also leads to confusion as different people are getting different information,” Dexter said.

Worsham also recommends that one primary contact is the best way to go.

“Remember that while we wish you could be with them, too, they are not alone. They’re surrounded by people who care deeply and who have devoted their lives to caring for the sick,” Worsham said.

“Everyone taking care of your loved one has spent years training for this. We are honored to be able to help in this crisis, and we’re bringing our best every day. You can trust us,” he said.

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