Though it seems intuitive now, acknowledging that family members are more than just visitors is a relatively new paradigm in critical care. Only in recent years, in view of data suggesting that family presence decreases delirium and might improve cardiac complications, did the intensive care units that had once been under a sort of lockdown move toward unrestricted visitor hours. With relatives present for much of the day, critical care teams spearheaded the radical act of inviting them on the morning rounds that once were the purview of the medical staff alone. In this same spirit, there has even been a move toward allowing family members to observe procedures in the intensive care unit, and to be present at the bedside for resuscitation attempts in the event of a cardiac arrest.
This is the world I entered when I began my critical care training. The attending physicians who trained me taught me to recognize the way my agitated patients calmed when a loved one entered the room, the way a hand on a shoulder could cause a rapid heartrate to slow, or how a delirious patient would smile when they heard a relative calling their name. Though I was initially uncertain, I learned to speak openly on rounds even as my patients’ relatives listened and took notes. I came to learn that although my patients’ family members might not understand our medical jargon, the very fact of being invited in — and then debriefing with the bedside nurse afterward — helped to build understanding and trust. If things did not go the way we all hoped, a relative who had been on rounds with us each day would know that we had done our best.
I think of those rounds now as I walk by our family waiting room. I remember coming out here to give good news and bad, hesitant at first in the early years of my fellowship and then with more confidence. When I became an attending physician myself, I would sit with families on these couches to look at photos of a vacation before the cancer diagnosis, to learn about how an intubated patient loved to garden or had always wanted an outdoor pizza oven. These conversations were not explicitly about medical care. But this unstructured time was important, as it allowed me to build the rapport that was necessary to navigate tough decisions. Now, the waiting room is empty, save for the occasional transport worker listening to music while on a break. We try to connect with families through phone calls and video chat, but technology is a poor surrogate for in-person connection. There is so much about our patients and their families that we will not get to know.
Just last month, a new fleet of interns joined us. They are learning how to be good doctors in a world of masks and distance and isolation. They do not know what it is like for the hospital to feel alive with family members in our hallways, cafeterias and waiting rooms. I want to teach them how much it matters, but as the months go by, I am already feeling a shift in myself. Our language has grown more casual. We talk about how a patient “acted up” or “gave us trouble,” phrases I would never use if that patient’s husband or wife were standing in front of me. We rely more on the flawed electronic health record for our patient histories, rather than clarifying details with family at the bedside. On a recent overnight, we admitted a patient from the general medical floor who spoke little English and required a mask over his mouth and nose to help him breathe. Only after we struggled and failed to communicate with him, as he teetered on the edge of an intubation that the chart said he would not want, did I think of calling his mother and sister into the hospital. Six months ago, I would not have hesitated to make that call.
When my hospital first banned visitors, I could not stop thinking about people dying alone. Those images will always stay with me. But the cost of this policy has gone far beyond those with the virus. It is that moment overnight when I did not think to call the family. It is in the many quiet hours my patients spend alone, the extubations that happen now without a loved one at the bedside, our patients waking from the nightmare of intubation to find themselves surrounded by the masked faces of strangers. It is our casual language on rounds and the fact that our patients’ relatives have stopped asking if they can come in, as if they no longer belong at the bedside. It is a new generation of doctors who might not know that families are necessary for healing. Bringing humanity to the intensive care unit was never an easy endeavor. Unless we focus on hospital visitor policies with real urgency, regularly and openly revisiting these rules as the coronavirus caseloads change in a given region, I can see our gains slipping away.