In late November, he turned up positive for covid-19 after going to the hospital after a fall. With pandemic restrictions in place that prohibited any visitors, my family and I grappled with how to advocate for him: Who should we call and how often? What should we ask? How do we make sure he’s in good hands when we can’t be there in person to see for ourselves?
During his hospitalization, I talked to physicians, nurses and patient advocates about navigating this new landscape. They provided these tips:
Know when to call — and when not to: It’s routine for nurses to answer calls from worried loved ones, and you can normally call anytime. Just ring the hospital switchboard and ask for the nursing station assigned to your loved one. But you’ll get more-informed, less-frazzled responses if you keep an eye on the clock. Nursing shifts typically begin about 6 or 7 a.m. and 6 or 7 p.m. That’s when new nurses come in and get updated by those who are leaving. Avoid calling around those chaotic times to give everyone some breathing room, said Joanna Smith, a patient advocate based in Oakland, Calif.
“If the shift is changing at 7, I’m not going to call between 6 and 8,” said Smith, founder of the National Association of Healthcare Advocacy.
Instead, to reach both nurses and doctors, the best time to call is probably after lunch when the morning’s rounds are finished, said San Francisco physician Charlie Wray. Experts say you also should feel free to ask when is the best time to get in touch. You can also try to set up a regular time each day for the contact.
Understand who knows what: Nurses are great at giving you updates about what’s going on hour-by-hour, Wray said. “For prognostic information — is your loved one getting better or worse, what can you expect over the next couple of days or weeks — you’re probably better off speaking with the physician. They’ll understand the trajectory of where the patient is heading.”
Keep in mind that your loved one may be treated by several physicians with different specialties. You can ask the nurse who’s in charge. It may be a specialist or a hospitalist like Wray — a physician who oversees the care of hospitalized patients.
Don’t overwhelm the staff: Designate one or two people in your family or group to call for information. One or two check-in calls a day are appropriate if your loved one is stable. “Talking to a doctor once a day and following up with a nurse is an overall middle ground,” New Orleans pulmonologist Joshua Denson said. Feel free to call more often if your loved one is critically ill, he said.
Remember that the pandemic is overwhelming many hospitals, and you may not always get a call back.
“It’s going to be hit or miss,” Wray said. “But remain persistent and keep calling on a daily basis.”
Focus on the big picture: Instead of trying to interpret numbers such as specific oxygenation levels, ask general questions, said registered nurse Kendra McMillan, a senior policy adviser with the American Nurses Association: “If your loved one is on oxygen, has the amount increased or decreased? Are they starting to be weaned off it? Are they eating well and staying hydrated?”
Melissa Cardine, a Gilbert, Ariz., patient advocate and registered nurse, suggests asking these questions when you talk to a nurse or physician: “What are your concerns? What information are you still looking for to treat my loved one?”
Talk to the patient if possible: If your loved one can speak on the phone, Wray recommended asking a simple question: Do you feel like you’re getting good care? “Patients can usually measure their care very well,” he said.
Wray also suggested asking about how they think their care can be improved. Maybe they’re cold at night and need more blankets, he said, or would like the IV catheter to be moved to a different site.
Many hospitals will set up video calls with patients so you can see them. Look for signs that something seems off: Is your loved one moving around differently than usual? Talking in an unusual way? Does their face look normal? “You’re the expert on that,” Smith said.
If something seems off, “tell both the nurse and the physician. Sometimes information like that can get lost in the shuffle. Tell anyone who will listen,” Wray said. “Make it be known to whomever you’re communicating with that you have a concern. This information is helpful for us and often acts as a harbinger for clinical deterioration.”
Be vocal when you’re worried about care: Ask for clarification if you don’t understand something, said Ghazala Sharieff, chief medical officer with San Diego-based Scripps Health. “If that person doesn’t explain it well, you can always ask for someone else to explain it.”
Understand how to escalate your concerns if needed: Don’t accept care that seems inadequate or staff members who aren’t responsive. “If you are unable to get any answers at all about your loved one or feel like you are not being heard, ask to speak to the charge nurse on the unit,” said Mike Hastings, a registered nurse in Edmonds, Wash., and past president of the Emergency Nurses Association. “If there’s still no satisfactory response, you can always ask to speak to the manager of the department or someone in their nursing administration office.” The highest person on the nursing side of a hospital, he said, is the chief nursing officer.
On the physician side, you can escalate to the hospital’s chief medical officer, who is responsible for the medical care that’s provided, Hastings said. Wray said you can also contact the hospital’s patient experience or risk management divisions, which handle complaints about patient care. “That will get the physician’s attention and alert them to the fact that you aren’t feeling heard.”
Don’t shy away from difficult questions: If your loved one is in critical condition, Denson recommended asking blunt questions about their prognosis since some physicians — especially younger ones — may not offer bad news without prompting. He recommends asking “How serious is this? Are they going to make it through the night? Do I need to be there?” In some cases, you may be able to visit at end of life despite pandemic restrictions.
Get ready for tough questions yourself: My father was in the hospital for nearly five weeks as he developed covid-19-related pneumonia and other complications. Two nights before Christmas, my father’s physician called with bad news: While his condition had seemed to be stabilizing, his medical team was suddenly unable to wake him up. What did we want them to do if his condition worsened?
We had given the hospital staff my father’s advance directive, which laid out what kind of care he wanted to receive — or not receive — if the end was near. But at such moments, it’s often common for physicians to seek guidance directly from loved ones instead of consulting a document that may be years out of date, said Wray, the San Francisco hospitalist. “Most of time we’ll defer to what the family thinks is best,” he said.
He recommended having a conversation with the physician overseeing your loved one’s care — typically a hospitalist — about wishes about treatment before a medical crisis erupts, especially since patients with covid-19 can worsen rapidly. Without guidance, Wray said, the default is to “do everything” such as performing CPR and connecting life-support devices such as a ventilator. “People don’t necessarily understand what the [lifesaving] process looks like and how violent and traumatizing it can be. It can have long-lasting effects.”
In my dad’s case, we told the doctor that we didn’t want CPR or life support because my father’s chances of a healthy recovery from those procedures were very slim. At 2 a.m. on Dec. 23, we agreed to allow my father’s medical team to administer a medication in a last-ditch effort to reverse his condition. Before they could get to him, however, my father died.
It’s deeply sad that members of my family — my brother, my mother and me — could not sit with my father during his final weeks because of pandemic restrictions. But the telephone allowed our family to feel confident that he was receiving good care. In these extraordinary times, we must make the best of what is possible, not what is ideal.
