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End Notes: What Palliative Care Looks Like in a Pandemic

The Maas Gallery, London via Bridgeman Images
Detail from Lawrence Alma-Tadema’s Portrait of Dr. Washington Epps, My Doctor, 1885

I helped a man to see his father on a ventilator using WhatsApp on my phone since he couldn’t figure out how to use the Zoom system on the hospital tablets. The son was in Haiti. He was told that his father was “crashing”—a word used in the hospital now for when the lungs are giving out. Computers crash, stock markets crash, cars crash. Now lungs crash.

The sound wasn’t working on my phone, but his father was in a medically induced coma, so the man said it didn’t matter to him—he just wanted to see his dad. If that wasn’t bad enough, the Internet connection wouldn’t hold the video call for more than fifteen seconds, so we figured out quickly that he could just call back and I would flip the camera each time so he could see his father. This was something we did a dozen times before he called me and said, “OK, that’s enough.”

There was a strange and unexpected intimacy in this: not merely being present at a moment like that, but seeing him seeing his father. I can’t get the look of serenity on his face out of my mind. Some greet fate with such grace.

*

An ideal that I’ve long cherished has changed because of the coronavirus, a bias that I realize now is so specifically American: what we think of as our love of freedom. My thinking was rearranged first by a class I taught by Zoom for the New School for Social Research on time and psychoanalysis, and then by working at the hospital as a psychotherapist in palliative care and with families of loved ones who were sick or dying, acting as a buffer, when possible, between the nurses and doctors and all this anxious familial communication.

This is a strange story to tell: it is about shifting ideals, how time unfolds for an individual, and the will to act or speak at the limit of life. Also, the care one must take when speaking of the dying or the dead. The hospital I’m in (which I am not naming in order to respect the privacy of patients and staff) has strange problems, too—problems that become someone’s problem only once someone chooses to take responsibility for it, and there has to be a someone; patients who were transferred from my hospital to the Javits Center field hospital couldn’t bring their personal items with them. Many who have left have since died, and their families want their belongings, which can’t be found. They may have been confused with the belongings of another deceased. So someone has to go to the morgue and look around. Could that someone be me? I hesitate.

In the class I was teaching, we discussed a text by the psychoanalyst Jacques Lacan, who uses the “prisoner’s dilemma” puzzle from game theory to delineate three kinds of time. In Lacan’s version of the riddle, there are: the instant of the glance, the time for understanding, and the moment for concluding. In the first instance, I look to others to try to decide what I am, or what I am not. I see something—coronavirus in China, for example—but I don’t necessarily know what that means about me. Am I infected? I don’t live in China. This isn’t my problem; this is their problem. This isn’t even a problem. This time is the time of the glance: seeing the other dying and quickly assessing what this means for me.

This leads to the second kind of time, the time for understanding, a time of meditation, in which I try to comprehend myself together with and among others. So much information crowds in during this time without any conclusion to our own dilemmas of imprisonment—about which of us can leave, how many are infected, what has happened in past viral outbreaks, what the others are saying (statistics, statistics, and more statistics, experts, experts, and more experts). At some point, Lacan says, we will realize that “we have surpassed the time for comprehending the moment of concluding,” meaning that it is now “the moment for concluding the time for comprehending.” In this moment, the snake eats its tail: all this information, but who is going to make a decision? Someone has to take responsibility. Someone has to do something. We watch one another hesitate. Time presses in, pushing on us.

*

The hospital is letting two family members in if a patient is going to die, though the relatives must understand that they risk exposure to the coronavirus. I greet two sons who have driven to New York City from New Hampshire and Rhode Island respectively to see their mother. Their sister is letting them go in, since they came from out of town, and she will attend with them via a tablet from the lobby of the hospital.

I help the men into their personal protective gear. I stop at a nurses’ station and tell them I’m taking one of the tablets that have a mobile stand and will bring it right back. We walk to the mother’s room. A nurse comes running after me yelling that I can’t just take things. The sons look at me, already horrified at the scene they are walking through, and where they’re going.

I try to explain to this nurse that they are here to say goodbye to their mother, but she isn’t listening. She grabs the tablet and sees that two of the wheels are missing from its stand. “You took this and you broke it,” she says angrily. “You are going to find those wheels.”

I walk her away from the room where the two brothers have entered to find their mother on a ventilator in an induced coma. The nurse and I see one of the wheels on the floor. I go and pick it up, but she’s still screaming at me about the situation, demanding to know where the other wheel is, and what’s wrong with me. Eventually, I give up trying to talk her down and walk away, muttering an apology.

When the coast is clear, I grab another tablet: I’m only thinking of the sister who made the decision not to see her mother and trying to get her in the room on Zoom. Behind me, I hear the nurse rushing back toward me, and turn to see a group of people stop her and try to calm her down. One comes over and asks me what is going on. I’m only a few sentences in about this family and palliative care, when she seems to understand and motions for me to go back, saying she’ll handle it.

I get the sister connected on the tablet, and she watches as her brothers stroke their mother’s forehead gently, pat her legs. I haven’t seen this before, as everything like this I’ve witnessed in the hospital so far has been virtual. After a time, they decide for themselves that they’ve had enough time with her.

As we leave the room, one of the brothers stops and asks me about a medical device in the room that has a picture of lungs on it, lit up bright green inside a body anatomically outlined, showing many of the other organs. He asks me if that is an image of his mother’s lungs, right now; she went into kidney failure, he tells me, but as he now looks for the kidneys, they’re not lit up in the frame.

It is, in fact, simply a generic illustration that signals that the ventilator is working. But I, too, was mesmerized by the green lungs when I first saw them, as if this was more than just an indicator that the device was switched on. I listen to the son: I understand the desire to see something that means something about what he has been told has happened inside of her.

I tell the two men that it would be good if they could take off their gloves and gowns and wash their hands. We do not any longer wash our dead, whom we will not touch anymore. Instead, we wash ourselves after having been in their presence. But any ritual can feel sacred, even for a second—before another nurse gets furious with us for using the wrong disposal bin.

“It’s crazy in here,” they say to me as we wait for the elevator. Their eyes are red and wet with tears. I tell them it’s actually calmer than it has been. And that’s why the tension is much higher among the staff, who are tired and finally have some breathing space, and seem to be unleashing. “It’s crazy in there,” he says again, this time to his sister in the lobby. “She took a lot of heat for us.”

“I don’t take it personally,” I tell them. I remember the night before, when a nurse was upset that no one had told her about the new protocol that applies when a patient dies: she was now supposed to leave the IV lines in the deceased patient, rather than risk more contact. “It would be nice if someone told us what the hell is going on here,” she says to the person who comes to relieve her at shift change. It would be nice.

*

The moment for concluding happens when someone seizes time, and this act is the most subjective moment in the process of unfolding time thus far in Lacan’s schema. But in giving oneself over to a decisive action, to a judgment whose validity or consequences can only be known after the fact, the process is ultimately non-subjective, impersonal. You give yourself over to history, even as you make your own declaration manifest.

Nothing guarantees an act is the right act. This is about total responsibility and, paradoxically, absolute surrender. There is even a kind of serenity possible, having left behind the urgency and tension for understanding, which has no definitive or guaranteed end. Understanding can go on and on, much as the question “Why?” The beginning instant and the final moment complete the circle of time. Then the whole apparatus starts over like a kind of breathing machine.

Once someone acts, it often precipitates the action of others—everyone rushes for the door. An action forces others’ hands. It is not merely the seriousness of the stakes, nor a competition that is set in motion, nor the fear of the other’s declaration and what that will mean for any one of us, that is at issue here, once the moment of concluding is foregrounded. These are part of it, and lie in its wake, but Lacan is at pains to establish the logical unfolding of these three phases that he says the psychoanalyst handles like clay.

On the one hand, Lacan says, this intersubjective problem is simply mass psychology, a sheer stampede that amounts to barbarism through and through. Action may thus degrade dangerously into contagion or conformity. On the other hand, it reserves the important place of individual power and responsibility where one can say “I”—as in, “I am a man,” “I am leaving,” “I have absolute authority,” “I love you,” or “I’ll go to the morgue.”

I never understood why psychoanalysis seemed to have such disdain for the idea of freedom. It also felt like an affectation particular to the French intelligentsia: “Je ne parle jamais de liberté,” said Lacan. Americans embrace it: Liberate Michigan! On the television in the lobby of the hospital is an angry woman with a sign that says, “Give me Liberty or Give me Death.”  

I understand a little more of what Lacan meant when he said that freedom’s most faithful companion is madness. The will to show a kind of unity, either as a united self or as a united group, often involves isolating a victim in order to feel a “bitter, jubilatory satisfaction”—or what Lacan calls the “suicidal aggression of narcissism.” I hope you find what you are looking for in freedom, Lacan retorts, quoting Molière’s The Misanthrope:

… some spot unpeopled and apart
Where I’ll be free to have an honest heart.

The lesson is that one can either be caught up in a mob mentality or rush to get out ahead of everyone else. We might desire informed, thoughtful, courageous decisions—the freedom implied in a vision of personal will—but it isn’t guaranteed; indeed, it is hemmed in on all sides by others and their actions. This is more a vision of leadership, of how interconnected and interdependent we are, than a vision of liberty. It would be better, says Lacan, if we were interested in truth over freedom, and attended to the problems of establishing truth, especially truth that can apply to more than one person, one life.  

“I am not thus avoiding the social tragedy that dominates our era,” writes Lacan, about what causes blood to be spilled all over the world, “but my marionette’s acting will show each of us more clearly the risk he is tempted to run whenever freedom is at stake.” But what makes the pursuit of freedom grow mad? What tempts us? Lacan goes on:

A weak organism, a deranged imagination, and conflicts beyond one’s capacities do not suffice to cause madness. It may well be that a rock-solid body, powerful identifications, and the indulgence of fate, as written in the stars, lead one more surely to find madness seductive.

In Lacan’s third phase, the time for concluding, there is a process of de-identification, of moving away from the images of others that crowd in after the instant of the glance, this looking to others to see who one is or what one might understand—like our fall into social media. The moment of decision is separation from the herd, maybe even opposition to its mentality. This de-identification allows for a truer appraisal of a situation, but it is an appraisal that is never complete, that still requires “belief” or an anticipation of certainty, a crossing of a gap.

This is what makes action so difficult, especially action taken for others, in the name of others, as a proxy or representative. Rousseau thought this was pure magic, an alchemical illusion by which one can supposedly stand for many. It is the will of one, but only for a brief moment. We are only free “to become what we are,” says Lacan, to see the “snare of fate that deceives” us about a freedom that we “have not in the least conquered.”

Do we really believe in the exceptional fact of the United States, in our founding fathers, the creed of one nation, under God, indivisible, with liberty and justice for all? Many, in the early days, said the virus did not stop at borders, did not respect hierarchies, that it affected all equally. Covid-19 was democratic. We were deceived.   

*

A seventy-year-old daughter tries to break into the hospital to see her hundred-year-old father, who is actually doing okay, for now. I come down to speak with her in the lobby, where she is being watched by security.

“Two months they didn’t let me see him in the nursing home, and he got sick anyway,” she says. “What’s the point of that? How did this happen? He’s the center of my whole life! Who are they to tell me I can’t see him when he’s sick now.” We talk a little. She tells me tearfully that her therapist says her father can’t be the center of her life. Everyone has their time. His time will come. But she is defiant.

“I’m not married. I don’t have any children,” she says. “He’s my whole life. What can I do?” This position starts to slip, as two become one. “He wants to see me! He needs to know I’m here. He would want to know that I came here for him. I’m his whole life. You can’t stop me.” She accepts seeing him on the tablet in the lobby. “Your daughter is here,” the nurse yells to the woman’s nearly deaf father.

“Daddy! I’m here. I love you. Daddy, I’ll try to live without you, like you said, but Daddy, I love you. I came to the hospital,” she gestures wildly, blowing him kisses. She looks like a twelve-year-old girl. She almost seems satisfied with the conclusion of this passionate performance, when she suddenly hesitates. “He doesn’t understand technology, he’s one hundred years old: How does he know I came to the hospital? How does he know that I’m here now?”

“He knows,” I say to her. “The whole hospital knows that you are here!” (Which happens to be true.) She laughs, pausing almost as if to feel the circumference of her love radiating out around her, then says, “He wouldn’t want me to get sick. I should go.” I give her a set of gloves and a mask since she didn’t come wearing any protection. As she finally leaves the hospital, she snaps at the man who opens the door for her for not wearing gloves. Strange that she speaks in the name of the law after this will to be the exception to the rule.

This daughter moves me: she’s like a Coney Island Antigone. There is some of that in me, the person who found her way to this hospital as a volunteer, someone who knows how to break down doors. But in the name of what, I don’t know. It’s certainly not freedom. Perhaps to be closer to death. To escape the endless and passive loop of this time for understanding.

With this septuagenarian daughter, what she is was clear to me; or rather, who she has always been—a daddy’s girl. I don’t know what she will be without her father. Love and freedom and madness in their pursuit of “oneness” belong together, according to psychoanalysis, a truth I don’t very much like as an American. But truth is always somewhere else, apart from this triumvirate. What she has made the center of her world will most likely leave her before she leaves it. This is something that is obscured in her suicidal aggression, a willfulness that mirrors the current hysteria of this country.

I go back upstairs to the makeshift Intensive Care Unit. I have a few more calls to make before I leave. One Muslim family that has spent the previous two days yelling hello at their grandmother, who is on a ventilator, interspersed with episodes of breaking down and crying, has found another way with these calls: they play songs of prayer to her, whose sound fills the ICU. Last call. A son puts on a prayer shawl and reads out Psalm 115 to his father:

Why do the nations say, “Where is their God?”
Our God is in heaven; he does whatever pleases him.
But their idols are silver and gold, made by human hands.
They have mouths, but cannot speak, eyes, but they cannot see.
They have ears, but cannot hear, noses, but they cannot smell.
They have hands, but cannot feel, feet, but they cannot walk; nor can they utter a sound with their throats.

I don’t know the Bible verse, only Shakespeare’s rendition of it: “Last scene of all, / That ends this strange eventful history, / Is second childishness and mere oblivion; / Sans teeth, sans eyes, sans taste, sans everything.” I move from the senselessness of false idols to the image of death that wipes out all the senses. Made by human hands.

These words arrive in a virtual moment of contact with the dying that I was responsible for arranging: in the face of the hard fact of the ventilator, the medically induced coma, this need to speak across such a gap to another who cannot respond. Where is their God? The coronavirus will have wiped out the false idol of freedom, for me, maybe for some others. In this moment, I am thankful, even if I myself am not religious, for the eloquence, for the verse, to have been witness to it. I think that this is the only freedom that psychoanalysis raises up, namely the importance of the freedom of speech: say everything. Speak, and smash false idols. Speak, and become what you are. Speak, in this last scene of all that ends this strange eventful history. The rest is silence.  

Martin Harrison/Museo de Arte de Ponce, Puerto Rico via Bridgeman Images
Detail from Edward Burne-Jones’s The Last Sleep of Arthur in Avalon, 1881–1898