In the opening scene of the Oscar – and Emmy-nominated documentary short film Extremis, Jessica Nutik Zitter stands over a patient’s bed in the Intensive Care Unit at Oakland’s Highland Hospital, holding the woman’s hand and asking her how she’s doing. Then she stops herself. “I know that’s a stupid question,” she says. “I don’t think you’re doing very well right now.” The woman is intubated and can’t speak, but Zitter asks her if she has enough energy to write. She hands her a purple marker and pad of paper, but her scrawls are incomprehensible.
After a little more fumbling, Zitter writes the alphabet on the pad and has the woman point to letters to spell out her thoughts. Zitter determines the woman wants the tube out.
“What if you die if I take it out?” Zitter asks.
Zitter is a critical and palliative care doctor and a self-identified “accidental activist” – she never set out to change the culture of medicine, but she found she had no choice but to try.
And for Zitter, trying looks like having deep, serious and sustained conversations about good end-of-life care. It looks like an article she recently wrote in The New York Times titled, “Should I Help My Patients Die?” and it looks like a Washington Post article she wrote titled “An Intensive Care Doctor Advises How to Soothe the Senses of a Dying Loved One.” It also looks like the critically acclaimed book she published in February titled Extreme Measures: Finding a Better Path to the End of Life.
I’m talking to Zitter because she’s coming to Seaside to show Extremis and speak about what good end-of-life care means in a talk called “Extreme Measures: A Conversation About Dying Well.”
Part of Zitter’s talk naturally revolves around her own evolution, and how she went from a hard-charging ICU doc, wanting to stick tubes in every feasible place on a patient if it meant saving a life, to taking a more measured and inclusive approach. It also includes a subject that initially made her and many of her colleagues squeamish – medical aid-in-dying, or helping terminally ill patients end their own lives.
The two have become intertwined, and both involve difficult conversations that many people don’t want to have.
“Human beings don’t like to talk about difficult things,” Zitter says. “When things get difficult we walk away, and that manifests as a lack of communication between physicians and patients, and between what a physician knows and what patients and their families think.”
It extends, too, to patients and their families.
“Given death is such a huge deal, if those conversations have never been had, as in, ‘If this happens or that happens,’ if a patient goes into a coma and people don’t know what they want, they may not be brave enough to make a decision at that point.”
In the aforementioned Times piece, Zitter recalls a colleague coming to her not long after the End-of-Life Option Act became law in California. The doctor had a patient who requested assistance in ending his life, and he asked Zitter, “Can we even do that here?” Since she dealt with palliative medicine, her colleague assumed she would know what to do, but she didn’t. As she wrote, it felt like the law passed so quickly that neither she nor her colleagues knew how to handle it. But when patients started asking for help, they learned, and quickly. What they learned is that many patients don’t realize their worst symptoms toward the end can often be alleviated.
“My belief is that people asking for aid in dying are canaries in a coal mine. They’re suffering the most and they indicate how poorly we’re doing at providing end-of-life care,” Zitter says.
Zitter’s book is a fast but meaningful read. Perhaps the most meaningful part comes at the end in an appendix titled “A Way Forward.” It’s a six-point path that included taking stock of your current situation, understanding possible future health challenges and identifying what matters, as well as how to communicate your wishes.
Since these difficult conversations are something we will all need to have, Zitter’s talk and her book are great places to start.