As soon as I see the name on my phone, it all comes back to me.
I remember the nights we spent outside his hospital room, adjusting his ventilator settings. I remember the anxious call to his family when he started to bleed into his lungs, and we did not know if he would make it. I can still picture the guide to Islamic end-of-life rituals that his nurses passed from shift to shift, the way it grew dog-eared and tattered.
Somehow, my patient survived Covid-19. He saw his son off to college. He was even able to return to work part-time as the manager of the liquor store near his home. In a way, his life is back to normal. But he is still haunted by the delirious hallucinations that make him feel as if he’s still in the intensive care unit. They’re his only memories of the experience.
Now his family has called me to say he wants to return to the intensive care unit. He wants to see how it feels in the room where he spent nearly two months of his life, to see the doctors and nurses who knew his body in a way that was at once profoundly intimate and oddly impersonal.
It has been a year, and to move forward, my patient and his family need to look back.
It might seem counterintuitive. Even as the C.D.C. lifts its recommendations on masks for vaccinated Americans, paving the way for a return to “normalcy,” our mental health work force has never been busier. The pandemic provided many of us with a sort of momentum and singular focus. All we needed to do was to get through it, to survive. But we are now in the world of “after.” And as we all emerge from this long tunnel, we need to recognize the invisible scars of critical illness and to marshal the resources necessary to improve the quality of the lives that were saved.
We have long suspected that critically ill coronavirus patients would be at high risk for what we call post-intensive care syndrome — a constellation of anxiety, depression, post-traumatic stress, cognitive dysfunction and physical limitations seen in those who survive critical illness. Our patients were often deeply sedated for weeks at a time to protect their lungs, without family at their besides. While it might have seemed that they were asleep and would remember nothing, that is not the case.
A sedated and delirious mind is still at work, trying to explain the inexplicable. A doctor placing a central line might become a memory of being stabbed in the neck. A urinary catheter warps into sexual assault, and the sound of a drawer closing is a gunshot. These images are vivid and crisp, and may seem more real than any other memory. They are also a recipe for post-traumatic stress, as patients more commonly flash back to these delirious hallucinations than to any actual event.
But given the stigma surrounding mental health and lack of access, particularly in the vulnerable communities who have been severely affected by the virus, our patients might be less likely to discuss these issues than they would a lingering physical pain. Others feel a real pressure to uphold the narrative of the hero’s journey, for their doctors and family to believe that they are simply thrilled to be alive. That they are OK. After all, we played victorious music when they left the hospital, sending them off into the sunset. They lived when so many others died. This is a gift but also a burden, one that is perhaps only perceptible now, as the music has quieted.
With the long-lasting consequences of this virus in mind, hospitals throughout the country are ramping up clinics for Covid-19 survivors. This is essential, but equally essential is that these clinics, which are often run by pulmonary doctors, integrate mental health resources. For those suffering from post-traumatic stress, anxiety and depression, early intervention matters.
This will not be easy. Mental health was under-resourced before the pandemic and is now even more strained. Here at my hospital, the behavioral health division is extraordinarily busy caring for patients who are sick and have complex needs — not just coronavirus survivors but casualties of the shadow pandemics of drug and alcoholic addiction and economic instability. And while we’re seeing creative solutions like telemedicine and support groups, the hard truth in much of the country right now is that when people are finally ready to get help, they may need to wait months even to be seen for an evaluation.
There has been so much waiting. So many wounds that we cannot heal, questions we cannot yet answer. Which is perhaps why I leapt at the chance to bring my patient back to the unit. It was just one piece of a long process that would involve his therapist and outpatient doctors, but it was a need that I could meet. And so one recent afternoon, I found myself standing with my patient and his nephew in front of the hospital room where he had spent two months of his life.
The unit was no longer dedicated to caring for Covid patients; these were all cardiac patients now, and the fear and frenzy were gone, as were the basins of personal protective equipment. The doors to the rooms were finally open. It was as if it had never happened. My patient was quiet.
The room that had been his was empty now, and I watched as he entered, tentative at first. He walked to the place where his bed had been, and his eyes landed on the digital clock directly in front of him. He paused. He remembered this clock, watching the time pass. He remembered the window too, how the light came through.
I tried to see it through his eyes. This was just a room. It was a room where he had nearly died, but now it was a room that he could enter and exit under his own power. Before we left, his nephew asked if he could take a photo. And as I stood next to my patient, holding the bouquet of roses that he had brought to say thank you, I realized what we were doing. We were trying to rewrite the story of this room, to reclaim the months of lost time and to shift a narrative of horror and powerlessness into one of hope. My patient was still recovering, and I could not know how this visit would affect him in the days and months to come, but it was a step forward.
As we walked out of the unit, back into the world, my patient’s nephew had a question for me: “Tell me, when do you think things will get back to normal?”
I thought about my patient and his family, how critical illness and recovery will always be a part of their story. They will not be the same — none of us will. Perhaps normality is not an achievable goal for any of us right now, but with time and the necessary resources, we can find a way to be OK.
“I’m not sure,” I finally replied. “I’m not sure what normal is anymore.”
Daniela Lamas, a contributing Opinion writer, is a pulmonary and critical-care physician at Brigham and Women’s Hospital in Boston.
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