Jessica Zitter, a palliative care physician and critical care specialist, well remembers the moment she knew she had to get off “the end of life conveyor belt”—which she describes as the automatic, unquestioning use of machines and procedures used to keep a patient functioning, despite the prognosis or the questionable quality of life it may bring.
In 2003, she was a “young attending” at a teaching hospital in New Jersey, having recently completed specialty training, summoned to the Intensive Care Unit (ICU) to put a large catheter needle into the neck of a female patient who was in the final stages of liver and kidney failure. Zitter’s focus on the patient was broken for an instant when she glanced up and saw a nurse leaning in the doorway, glaring and tapping her foot, then pantomiming holding a phone to her ear while pleading: “9-1-1. Get me the police. They’re torturing a patient here in the ICU.”
Zitter says she felt stunned, then ashamed.
“My heart dropped into my stomach and I realized: ‘Oh my gosh, she’s right. What I’m doing right now is not going to help her. It’s not going to get rid of this disease that’s killing her—and I don’t want to do that anymore,’ ” Zitter says.
She now recounts this personal turning point to rooms packed full of listeners in lectures with titles such as “The New Kind of Heroism: Extreme Measures at the End of Life.”
She writes about it in Extreme Measures: Finding a Better Path to the End of Life, a recently-released book filled with stories of patients’ final struggles written in plainspoken prose.
And she retells it in “Extremis,” a 24-minute documentary film nominated for an Academy Award, among other honors, in 2016. The film, now on Netflix, has been screened in more than 136 countries.
Scenes From an ICU
“Extremis” turns an intimate lens on the inner workings of an ICU, where doctors, family members, and patients are called upon to grapple with making life and death decisions.
In one scene, Zitter struggles to understand a bedbound patient whose face is obscured by a breathing apparatus while she attempts to communicate by pointing to letters sketched on a sheet of paper. Over the bleeps of the ICU monitors, Zitter asks at last: “You want the breathing tube out? What if you die if I take it out?”
Another scene focuses on a woman who lost consciousness for many minutes following a cardiac arrest, and now appears unresponsive. Her only daughter drove her to the hospital, as the woman felt she could not afford the estimated $2,000 an ambulance ride would have cost. “Even though my mom is in this situation, it would feel like murder to me to pull that life support,” the daughter says.
And in one of the film’s most wrenching moments, a prone patient wearing a breathing mask is questioned about whether she wants to have a tube inserted into her trachea to help her breathe: “I’m 38,” she says tearfully. “I don’t want to give my life away yet.” The next shot shows Dr. Zitter outside the patient’s door, collapsed in tears over the arm of a chair.
Reality v. ‘Grey’s Anatomy’
Zitter acknowledges that death avoidance is inbred in many Americans. “We really do want to live forever,” she says, adding that popular television shows, “like ‘Grey’s Anatomy,’ where doctors are pulling rabbits out of their scrubs,” are at least partly to blame for fueling that myth.
In her talks on end of life medical care, Zitter cites studies and statistics as proof that rabbits rarely make it into ICUs. Among them:
- A national study of patients admitted to ICUs found that 2% were readmitted to the same ICU within 48 hours of being discharged; 4% were readmitted within 120 hours.
- A recent poll revealed that while 80% of all people questioned said they would prefer to die at home, only 30% actually do. Additional realities contrary to personal preferences: more than 60% of people die in pain; 30% of them have ICU stays just before dying.
- A majority of hospitalized patients with serious illnesses recently rated bowel and bladder incontinence and dependence on a ventilator as worse than death. And more than half rated reliance on a feeding tube, confinement to bed, dementia, and the need for 24/7 care the same as death or worse.
- And tellingly, after 99% of the doctors at California’s Stanford Health Care reported they had barriers to having conversations with their patients about end of life care, a colleague there polled them and found that 88% said they would choose to forego aggressive care if faced with a terminal illness themselves.
Choosing Cabernet Over Chemo
But Zitter believes that terminally ill patients who are able to face the reality of their own deaths are more likely to have happier endings.
And she tells another real life anecdote to illustrate. Years ago, she was assigned to care for a woman with Stage 4 lung cancer who had been admitted to the ICU with barely measurable blood pressure, but revived some after being hydrated. Before the patient was released from the ICU to a hospital room, Zitter decided to have an honest talk about the outlook for the future: chemo had stopped working, there were no surgeries or other treatment options to offer that might keep the cancer at bay. But when Zitter mentioned the words “death” and “dying,” the patient’s daughter ordered her out of the room.
Though the patient was no longer her responsibility, Zitter visited her hospital room a couple days later — and found her sitting upright in bed, happily engaged in an animated FaceTime chat with her daughter on an iPad, planning her next steps: “I want to drink lots of red wine — I’ll start with a Cabernet. And I want to eat cheese and talk to my friends,” the patient said. “I didn’t know I had choices.”
Released from the hospital, the patient lived four fulfilling weeks with the help of home hospice care.
“We didn’t save her life — she was dying,” Zitter says. “But we did save her death.”