How to Hope: by Warren Bull

How to Hope: by Warren Bull

I had two bone marrow transplants. I can confirm that Dr. Adrian’s description is accurate.  I see no reason to add any additional comments.

image by Aditya Romans on Unsplash

Medical Dispatch 

From The New Yorker

How to Hope: Lessons from a Children’s Hospital

By Chris Adrian

April 3, 2020

April 3, 2020

Every few weeks, I spend the night at one of the children’s hospitals in Los Angeles. I’m a palliative-care doctor, part of a team that sees kids with complicated chronic illnesses and works along with their other care providers to alleviate their physical, emotional, and spiritual pain. But I help out now and then on the bone-marrow-transplant (B.M.T.) unit, when a doctor’s needed on the overnight shift. Children get their transplants very soon after they’re admitted, and at least one parent will stay with them through the whole course of their hospitalization. The life-saving procedure is somewhat anticlimactic—it’s technically similar to a blood transfusion. But the immediate aftermath is always fraught with peril, and sometimes rife with complications.

On any ordinary night, I shuffle affably around the horseshoe-shaped ward, saying hello to the families before it gets too late. I check in with the nurses throughout the night. I talk to the laboratory when they have urgent information to pass on. I take calls from parents whose children, at home after graduating into the outpatient program, have some new symptom and who need guidance about what to do next. I trained as a pediatric oncologist, but it was only ever my foster home in medicine. I learned to be a hospital chaplain, hoping that it would make me a better oncologist, but it turned me into an entirely different kind of doctor. I miss pediatric oncology, though, and I miss especially the particular community of the B.M.T. ward. Every child who is admitted there stays for at least two or three weeks, and some stay for months, which makes for a very rich continuity of care. A visit to a family’s hospital room starts to feel like a visit to their living room, as if we’re all not only walking in and out of their care but in and out of their lives.

Of course, there’s been nothing ordinary about working in the hospital lately, under the ever-darkening shadow of the coronavirus pandemic. I remember my shift this past week being fairly mellow on the level of clinical drama—nobody had trouble breathing, nobody got a fever, nobody even got a rash—but it was suffused with an anxious, expectant tension, which seemed further accentuated by the quiet. We’d already started to defer some scheduled admissions, to reduce volume in the hospital (we anticipated that we would likely be receiving children from adult hospitals, to help them build surge capacity), so many of the rooms were empty, the beds made up immaculately behind the glass doors, the monitors polished and gleaming, the yards of wires and tubes neatly coiled and hung. All over the hospital, there were signs of change, even down in the cafeteria, where the seating area had been closed down and the salad bar had suddenly atomized into constituent, plastic-wrapped pieces of lettuce and broccoli and cherry tomatoes in pairs. It seemed like everything was different and like everything was still about to happen.

I spend those nights on the ward as a pinch-hitting transplant hospitalist, but I try to keep palliative care in my posture. I try to be present, in the way that the discipline has taught me, for people’s hopes and fears, even in a conversation about a fever or a rash. My intention the other night was not different, though, in practice, everything was different, altered by that omnipresent anxious tension. I aim on a usual night to go into most of the rooms, to introduce myself to patients and parents and remind them that there’s a doctor on the ward overnight, to answer questions or just to talk. Now that sort of quasi-social visit seemed like reckless folly. Last week, I sent greetings through the nurses, instead. I knocked on glass doors. I waved. And when, in my shuffling rounds, I happened to catch a mother in the hallway, I said hello from a distance.

As she washed her hands in the hall sink—parents have always washed their hands for at least two minutes before they go into their children’s rooms—the mother told me about her trip to the grocery store, shaking her head as she described the empty shelves, where all the pasta and rice and toilet paper used to be. Though her child had been admitted with us for many increasingly tiresome months, she said that tonight she felt grateful for the delay in getting home. She felt much safer in here than she did outside. I nodded, and then she nodded, and then we smiled awkwardly at each other as she finished up.

There aren’t many truisms in palliative care, a medical specialty that might best be broadly described as a multidisciplinary effort to meet people where they are as they reconcile themselves to extreme personal crisis, and to help them discern what matters most to them and then make a vigorous effort to arrange their—or their child’s—medical care such that it supports and celebrates their values and their personhood and their lives, regardless of whether or not those lives can be saved. There’s no formulaic way to meet patients and families where they are in their coping, but in my training I learned not to say certain things, such as “I know just what you’re going through,” or “Nobody gets more than they can handle,” or, especially, “Everything is going to be O.K.” You have to say such a thing only once, never mind whether it’s spoken out of hope or experience, to learn how it can make a person feel unheard and unseen in their disorientation and suffering, how it can make them enraged. And yet working with families over months and years teaches you to hope that life reconstitutes on the other side of catastrophe, and that people can find joy in living again on the far side of unbearable loss. In the palliative-care encounter—which is really any clinical encounter set within catastrophe, whether fast or slow—you can try to know such things in your heart. You can’t say them out loud, but you try the best you can to hold on to them, for the sake of your patient.

I didn’t say anything to that mother at the sink about everything turning out all right or getting through it, though some part of me strained desperately against my training to make some gesture of reassurance to both of us. More importantly, neither did she. But something in her posture and her own awkward smile brought me to imagine, or to understand, that she was holding the same sort of space for me that I wanted to hold for her. And who better to reassure me against the fear I’d been carrying around all week than someone who had survived for months under a direct threat of losing the things in the world that she valued the most?

I’ve thought every day since then, as I struggle to contain my compounding anxieties surrounding the coming weeks in the U.S. and the world, about the strange axis around which we all eventually turn as health-care providers—each of us becomes a patient, in time. In time, each of us loses people we love to illness. Usually, we go there one by one, but it seems to me now that we are all suddenly turning at once, as if that mother’s awkward smile were saying to me and to the whole professional half of the hospital, to all the non-patients, “Welcome to my world.” In my perception or projection, she was saying this with a very generous compassion for my anxiety, for my dismay at being challenged to accept my own medicine, the medicine of palliative care, which shelters me as an intellectual and emotional and spiritual home both within the hospital and outside it. I know better than to say such things to patients or families, and I know better than to say them to myself or to my own family. But I can try, as I’ve been trained to, to attach myself to a hope, always too fragile to speak aloud, that we all might one day eventually be—in some tattered, transfigured way—O.K.