He was one of the few ICU patients whose face I saw in early 2021, when COVID raged through Los Angeles. As a palliative-care physician, my job was to meet, over Zoom, with the families of intubated patients to ensure that they had complete medical updates and to help them make difficult medical decisions on behalf of their loved one, particularly when that person faced death. But in a surreal departure from my usual practice, I’d never once seen these patients myself: At the time, to minimize exposure to COVID, the only people permitted to enter the ICU regularly were members of the ICU team.
This particular patient had survived several risky surgeries the year before; he’d returned to the hospital that winter after he became short of breath and began to gasp for air, his wife panicking as she watched his lips turn blue. He’d quickly required intubation and medications to increase his dangerously low blood pressure. His wife told me that during his many previous illnesses, she had slept every night in his hospital room, making sure he asked for pain medications and watching movies with him to pass the time. “He fought harder to live when I was there,” she told me. 
I dreaded explaining to her, and to all my patients’ families, that our hospital would allow a visit only if a patient became irreparably sick; even then, just one family member, unrecognizably ensconced in layers of PPE, could spend 10 minutes in their room before a physician removed life support. I struggled to tell those families that many of my patients still died alone, their condition sometimes worsening too suddenly and unpredictably for a loved one to arrive in time.
The tragedy of people suffering and dying alone is one of the enduring and unaddressed traumas of the pandemic. During early surges, we restricted visits to stop COVID from spreading. Yet even when the number of infections dropped and rates of transmission slowed, many of these strict policies remained in place, despite the immense damage they did to patients, families, and hospital staff.
Hundreds of thousands of people in the United States died from the disease in those first few years, and many of them died isolated from their friends and family. Intubated and unconscious, they may not have known they were alone, but their family members did, and many developed PTSD. Around the world, ICU staff, too, became distraught and demoralized by caring for an onslaught of people dying in isolation.
Some states have since passed laws codifying families’ rights to visit loved ones in the hospital, but for the most part, this phenomenon has been treated as a painful memory, not something worthy of public conversation. Yet only by facing the ways that the separation of patients and families reshaped the human experiences of grief and loss can we understand why we must do better next time.
In late 2020 and early 2021, Los Angeles experienced a version of what New York faced at the beginning of the pandemic: a terrifying and rapid onslaught of COVID cases. Lines of ambulances wound around packed hospitals; vital oxygen and ventilators dwindled in the hardest-hit areas. Within the hospital, because of social-distancing mandates, my team and I could no longer share an office, and I’d leave work having interacted directly with a few patients outside the ICU and a handful of colleagues. When I left, I drove through streets lined with darkened storefronts, emptied of cars and people. Governor Gavin Newsom had reinstated stay-at-home orders for all regions with less than 15 percent of ICU beds open.
At the time, and during the worst stretches of the pandemic, numbers became our singular focus at the hospital: The number of vaccinated people, remaining ventilators, and local COVID cases all shaped how we cared for the sick and protected staff. Family members suddenly became visitors, and visitors were vectors. And despite witnessing the tragedy of isolated people dying or experiencing illness alone, I resigned myself to the fact that there was no other way to contain viral spread, particularly when COVID infections among hospital staff rose.
But as the months passed, the gains of limiting visitation dimmed as the human cost of preventing family from visiting sick relatives became clearer. In recent years, medical practitioners have recognized that families are not merely a comforting presence but also integral parts of care teams who might help us understand how a person with dementia expresses pain, or how to persuade a stubborn person to participate in physical therapy. Relegating their visits to life’s end felt disrespectful to them and to my patients.
The scenes from my day that began to haunt me, even when I tried to distract myself after work, were of people enduring the consequences of facing illness alone, forcibly separated from their loved ones. In the hospital courtyard, I’d consoled the frightened teenage daughters of a single father and brought in family photos they’d framed for him as he underwent chemotherapy. An older patient with dementia had needed strong medications and restraints to treat delirium, which her husband told me she had never required when he was at her bedside. A gentleman with emphysema had wept, fearing that without his wife he wouldn’t be able to alert a nurse if he couldn’t breathe. The pandemic destroyed the rituals of funerals and memorials, but it also destroyed the rite of helping a loved one through illness.
And when life’s end approaches, I’ve seen over and over again the specific consolation that accompanying a person to their death can offer. Experiencing a loved one’s care together, attending to needs that only kin know, understanding that you were there with them as they faced the ultimate unknown, allows for a sense of agency amid circumstances rife with powerlessness and uncertainty. Before the pandemic, I’d observed how witnessing the details of a person’s illness profoundly helped families tell a story about a loved one’s final days or hours—about applying ChapStick to your father’s drying lips when he could no longer swallow water, or holding your brother’s hand as nausea from an inoperable brain tumor overwhelmed him, or playing music to ease your partner’s confusion as she died from kidney failure.
Instead, the families I worked with during the pandemic understood their loved one’s illness only through the words of masked care teams whose faces they never saw. Over iPads, we could offer only momentary glimpses of their beloved, pointing out the purpose of each machine surrounding them. Deprived of the sensory experience of seeing illness unfold or watching treatment fail, families struggled to make urgent decisions and to come to terms with medicine’s limited ability to reverse COVID’s many devastations.
Hospitals certainly had an obligation to protect staff from COVID infections; especially early in the pandemic, when PPE was limited and no one knew much about this new virus’s behavior, limiting visitors was necessary. During the surge in early 2021, most hospitals generally had sufficient PPE, and physicians had a better understanding of the virus, but many of my colleagues still became exposed and infected. Whether they had contracted the virus within or outside the hospital was not entirely clear. If family members agreed to wear PPE at all times and to present a negative COVID-test result, perhaps they could have been allowed to visit while minimizing the risk of infecting staff. (Some research has suggested that adequate PPE reduced the risk of transmission, but there aren’t enough studies to determine whether limiting visitors protected staff from infections.)
Every hospital had its own policies, but sometimes even when visitors had been vaccinated or had tested negative for COVID, visitation rules didn’t change. I often wonder whether this may have been different had more of us on the front lines insisted more forcefully that minimizing deaths wasn’t the same as minimizing suffering, that the emotional aftermath of these decisions, which weren’t always modified even when schools and businesses reopened, had indelibly altered our own lives and those of patients and families.
The alternative to no visitors doesn’t have to be no rules: When legislators have tried to codify visitation rights, in many cases they’ve allowed for at least one designated visitor, for at least one hour a day, while also respecting hospital policies to enforce safety measures to ensure infection prevention. Yet as accounts of the human toll of strict visitation policies began to emerge, hospital administrators could have asked themselves, and their staff, earlier and more often about ways to accommodate visitation while also taking all possible measures to minimize COVID transmission. Without that grace, the extreme version of traumatic loss that patients’ families and medical teams were forced to experience continued, unabated.
When a person can only imagine scenes and invent details of a death, they may face the kind of ambiguous loss first used to describe the experiences of families whose loved ones had gone missing in Vietnam. Living both with the fact of a death and without any details or evidence of what led to it can keep the loss from seeming truly real. Ambiguity haunts every loss to some degree, but these deaths in isolation denied families the opportunity even to try to witness the unfolding of illness and their loved ones’ last moments.
Imagine seeing, as my patient’s wife did, mere images of a ventilator, bags of antibiotics, and blood-pressure medications hanging from a pole above the person she loved. Imagine only hearing about how he shook from fevers and thrashed about amid spells of confusion. The ICU resident and I pointed out the way his skin had turned sallow, his arms newly marbled by bruises. Even with the maximum support from the ventilator, his lungs struggled to maintain a normal oxygen level, and his heart couldn’t pump blood efficiently, causing his legs to swell and several of his toes to turn blue. But describing all of this, or telling her that blood had begun to pool in his mouth, could not stand in for her experiencing his deterioration herself—pressing her hands against his newly unrecognizable limbs or seeing his lips newly crusted with crimson scabs.
I remember him so well because I had to enter the ICU briefly to speak with a colleague, and his was the first room on my right. I had seen him, as his family had, only through the camera of the iPad used in family meetings; I gasped at the shock of seeing for myself the sharp angles of his face, his dusky toes, and the blood streaking his breathing tube. Nearly two weeks after he first arrived in our ICU, his heart, lungs, and kidneys were all failing. He was dying. And so his wife, who agreed that he wouldn’t want to live this way, on life support, could finally visit.
I learned later that I had just left the hospital when she arrived in the ICU. She wanted to remove her gloves to press his hands into hers, one final time. This, unfortunately, wasn’t allowed, his nurse said. She stepped out of the room for a few minutes to give my patient and his wife privacy. When she returned, my patient’s wife had disappeared. He died half an hour later.
Over the next few days, I called his wife several times, though she never returned my calls. I tried to imagine what might have happened in the minutes she saw her husband for the last time. Perhaps she obeyed the rules. I like to imagine a different scene: Perhaps, in a final, defiant act of love, she removed her gloves, kissed her husband’s hands, and smoothed his hair before slipping out, unnoticed, preparing herself to live in a world without him.
