In the quiet, early morning hours of September 13, Netflix added “Extremis,” a short but powerful documentary about end-of-life care, to its streaming collection.
Dan Krauss’ short film won the Best Documentary Short award at Tribeca for 2015, and for good reason. “Extremis” is only 24 minutes long, but every vérité second matters as we’re granted access to the ICU of a hospital in Oakland, Calif., and the life and patients of Dr. Jessica Zitter. The camera doesn’t shy away from the emotional intensity, of both patients and their loved ones; it can feel almost like invasion.
My sister was horrified when I told her I planned to watch and write about “Extremis” the day of its debut: “How? You can’t watch it. It’s too much, at this certain time. It’s heartbreaking.”
It’s a few days before the first anniversary of our mother’s death, something still both unreal and far too real to me. My sister couldn’t contemplate watching something so close to home right now, I understand. But in the last six years, I’ve been a caretaker at the end three times: My grandmother, my grandfather, my mother. Everything about “Extremis” feels familiar, not terrifying.
Hands are a recurring theme throughout the documentary, from the very the first image. Hearing is the last sense to go, the doctors and nurses and chaplains always tell you that, but touch gives the rest of us something to do, a way to connect, a way to comfort. This patient’s hand floats here and there, trying to communicate with Dr. Zitter — her shaky attempts at writing a series of purple scribbles falls across the paper like a collapsing staircase.
The patient wants to talk about her breathing tube, and Dr. Zitter asks brightly and directly, “Do you want me to take it away? You want it out? What if you die when I take it out?”
It sounds like an awful question, doesn’t it? But comforting to hear, in that stillness. We don’t ask the dying what they think about dying often enough.
In voiceover, Dr. Zitter tells us something we already know, but will never be ready to hear, “Here’s the reality. We’re all gonna die. Everyone standing in this room is gonna die one day. And it’s good to have a little bit of a say in how.”
Two families form the main focus of “Extremis.” First we meet Donna, in the end stages of myotonic dystrophy, a form of muscular dystrophy. We meet her on a ventilator, barely visible under blankets and machines and tubing. Her husband, Gordon, bends over her, calling her sweetheart in a soft, soothing voice, and Donna’s eyes ask Gordon why her arms are strapped down.
Gordon explains, with painful honesty, that they are there to keep her from pulling anything out, to keep her safe, but safety is an abstract concept when you’re at death’s door. We worry so much about them hurting themselves, and rarely whether our ministrations might be hurting them more.
Donna’s doctor, Dr. Bhargava, explains to Gordon that if Donna’s muscle strength doesn’t improve, a breathing machine will be her only other viable option. Gordon blinks back tears and asks, “Is it just… Is it just to kinda… Keep her in limbo?” You can see Dr. Bhargava falter as she agrees, “You’re right. It’s a form of limbo.”
Gordon and their daughter gaze at Donna, a dozen emotions cracking their faces open even as their expressions never change.
Gordon strokes his sweetheart’s hand, nods resolutely, and tells Donna, “I’ll do right for you.”
Selena is the second patient we meet. She stopped breathing in the car on the way to the ER, and spent 16-26 minutes without oxygen before being brought in and put on a ventilator.
Her daughter, Tama, is doing a thing we all seem to do, still riding high on the adrenaline of a tragedy: As Dr. Zitter patiently works with Selena, encouraging her to squeeze her hand, to no effect, she explains her concerns to Tama, about the lack of response. But Tama is certain, resolute, in her conviction.
“To me, this whole situation is miraculous in and of itself, so I’m always looking for another miracle.”
There’s a terrible amount of strength in this place. There’s no room for vulnerability, only room for action, but even that is fragile as fine china.
The rest of the film follows these two families, and Dr. Zitter, as they struggle with the staggering weight of holding another person’s life in your hands. In one particularly poignant moment, Dr. Zitter half collapses onto the arm of a chair in the hallway; in another, she offers Tama a frank kindness that is no substitute for a miracle.
When Dr. Zitter asks Tama to consider what Selena might say, if the doctors told her there was no way she would ever wake up, Tama snaps. Even behind her dark sunglasses, her grief is as bright as a laser.
“My mom already made her decision. And that’s how come her heart is still beating. She can go at any time, but she knows to stay here because she loves me. If I were to pull that life support, there would be no me.”
Of course, Dr. Zitter knows miracles aren’t always the same thing as wishes coming true, in our better moments we all know that — but she also knows that sometimes we hold onto what we can, just to keep our heads above water.
In the last minutes of the film, we return to Donna. More alert than we’ve seen her, and communicating with Dr. Bhargava’s help, she asks when the breathing tube is coming out. It’s a hard question for the doctor — she must admit they simply don’t know. After she leaves, Gordon and the gathered family lay out the cold options.
If she can breathe on her own, they’ll take the tubes out. If she cannot, they’ll have to do a tracheotomy and hook her up to a machine. It’s a decision they don’t want to make for her, and when Donna shakes her head, Gordon tries to make absolutely certain.
“No? You don’t want a feeding tube and the tracheotomy? No? No matter what.”
Donna shakes her head, Gordon turns to their family, and his palpable relief takes years off his face. He leans in close to Donna and whispers, “You did the right thing, okay? I’m gonna do the right thing, just trust me. Do you trust me?” Donna nods. He trusts her, too, and he promises to take care of their daughter, and he kisses her forehead.
“I got her.”
“Extremis” is about a few simple, unimaginably large things, at its core. Hearts beating ever slower, hearts breaking ever faster. It asks a lot of questions, knowing it can’t answer them — and knowing that we can’t, either. But the act of questioning is the first step to accepting, and acceptance is integral to our healing. It is part of knowing each other, and we must know each other to love each other, and to trust each other.
Throughout the film, we are shown vignettes of other rooms, other daughters losing mothers, other lovers losing half their hearts. One young woman stands weeping, dropping tears like a baptism, like absolution, onto her mother’s bed.
“It’s okay,” she reassures her, in a role reversal that suddenly seems to be taking place all over the unit. “Things happen. It’s okay.”
Things happen. It’s okay.