Ending The End-Of-Life Conveyer Belt

From the time she was a young girl playing with her surgeon father’s doctor bag, Jessica Zitter wanted to save lives. In medical school, Zitter specialized in critical care, which she saw as “the ultimate hero’s specialty,” and later became an Intensive Care Physician.

As a young intern working on an ICU, she never imagined that, twenty years later, instead of trying to prolong lives at all costs, she’d be working to help patients experience what she calls “a good death.” Now, in the Intensive Care Unit at Highland Hospital in Oakland, California, Dr. Zitter leads a team that helps terminal patients prepare to die. Her work is the subject of the Netflix documentary Extremis, as well as the focus of her recent book, Extreme Measures: Finding a Better Path to the End of Life.

Jessica Zitter. Photo: Michael Kowano

Zitter’s current medical practice, a rare combination of Intensive Care and Palliative Care, evolved in response to a trend she observed in the medical world: Both doctors and patients have a tendency to avoid talking about death—a form of collective denial that “fuels a tremendous amount of suffering.” One in five people in the United States dies in an Intensive Care Unit, usually in cold and clinical surroundings, isolated from their families. Elderly and terminally ill patients are painfully intubated and catheterized before dying on what Zitter has dubbed the “End of Life Conveyer Belt.” While desperately working to keep patients alive at all costs, doctors often don’t realize when these efforts cause more harm than good.

Both doctors and patients have a tendency to avoid talking about death—a form of collective denial that “fuels a tremendous amount of suffering.”

In Extreme Measures, Zitter makes a compelling case for increasing compassionate, patient-centered palliative care in the modern medical establishment. Through rich patient histories drawn from her work in more than twenty prestigious hospitals, she chronicles her shift away from the ICU’s fervent push to prolong lives at all costs and toward holistic palliative care. Here, Zitter discusses the fiery nurse and two patients whose end-of-life experiences shaped her thinking about palliative care, and the need for revised societal approaches to talking about death.

Pat Murphy

Dr. Zitter’s epiphany moment came in 2003 when, as a new attending at University Hospital in Newark, New Jersey, she was about to insert a catheter into the neck of a dying patient. “There is probably no turning this around,” Dr. Zitter remembers thinking—the patient’s kidneys were failing, her liver was shutting down, her blood pressure had plummeted dangerously low, and the acid level in her blood was dangerously high—“but we might as well give it a try.” For doctors armed with miraculous life-extending technologies, letting a patient die often feels like failure—or a kind of murder—even when it’s the most humane option.

With needle hovering, Zitter felt the glare of Pat Murphy, the nurse who ran the family support team, an early version of a palliative care team. “Pat stood in the doorway and pretended to call the police,” Zitter says. “She held an imaginary phone to her ear and said, ‘Nine-one-one, get me the police. They’re torturing a patient in the ICU.’ I knew she was right.”

“She held an imaginary phone to her ear and said, ‘Nine-one-one, get me the police. They’re torturing a patient in the ICU.’ I knew she was right.”

Zitter realized she’d been doing this a lot—performing painful interventions that might technically prolong patients’ lives, but that ultimately wouldn’t help them recover. “Often, because they were beyond recovery,” she says. “And I was doing it without really explaining the full range of options, or giving them an honest assessment of their prognosis.”

That day, after Pat mimed calling 911, Dr. Zitter inserted the catheter anyway. It did not prolong the patient’s life. But the experience started Dr. Zitter on a different path, one that led to advocacy for a very different way to treat the dying. “What I learned from that case—in addition to the fact that we needed to have a more patient-centered, honest approach—was that it’s really hard to stop a moving train,” Dr. Zitter says. “We need structures in place before someone is in extremis, protocols that can help us be lithe on our feet and shift the plan as needed depending on what is best for the patient.”

Vincent

By the time Dr. Zitter met Vincent, an 85-year-old nursing home resident in Newark, New Jersey, he “was no longer really with us,” Zitter writes. He had entered the ICU with septic shock from pneumonias caused by food coughed into his lungs, which required surgeons to sew a feeding tube sewn his stomach through which artificial nutrition could be pumped twenty-four hours a day. “The only signs of life occurred during dressing changes and bed turning when, despite extra medication, pain fired up in dormant neurons and his blue eyes flared,” Zitter writes.

Vincent had no friends or family to provide guidance for doctors’ treatment goals. The only thing they had to go on was the Advance Directive Vincent had signed ten years earlier, indicating his wish that doctors pursue every possible attempt to prolong his life in the event that he can no longer speak for himself. Double-stapled to the form was note Vincent had written on lined paper: “To any doctor who will take care of me in the future,” it read, “I want you to do EVERYTHING in your power to keep me alive AS LONG AS YOU POSSIBLY CAN!”

Long before they are ill and can no longer speak, people need access to the kinds of resources than can enable them to make truly informed decisions about how they want to live their lives.

Legally, Dr. Zitter and her team had to follow this Advance Directive, which meant they used technology to “keep Vincent’s body going even while it was trying its hardest to die,” Zitter writes. Over the course of nine visits to the ICU, Vincent had a breathing tube sewn permanently into his neck, as he’d become too weak to support his own breathing, and a tube sewn into his bladder because of his chronic urinary tract infections. On the ninth admission, “this man’s body was being eaten away to a degree I had never seen,” Zitter writes. A month later, he died during continued deliberations—after suffering that Zitter viewed as needless.

“I don’t think Vincent could have had any idea of how much pain and suffering he would endure as we followed his instructions,” Dr. Zitter says. “I fervently wished I could have traveled back in time with Vincent to lay out the various ‘what if’ scenarios that he might encounter, including all of the grisly details, to confirm that he actually wanted what we gave him. Uninformed decision-making can be as bad as no decision-making at all.” Sometimes, as in Vincent’s case, it can be worse. “Long before they are ill and can no longer speak, people need access to the kinds of resources than can enable them to make truly informed decisions about how they want to live their lives. Right up until the very end.”

Marcia Green

“Patients trust that we are working in their best interest, and so if we continue to offer them interventions—miracle treatments and Hail Mary passes—they will sign on,” Dr. Zitter says. “If that’s the only model of care they are offered, what other options do they have?  But I meet so many patients who tell me that they didn’t know there were other options, or even that they had a choice.”

Marcia Green was one of these patients. When she was diagnosed with metastatic lung cancer with a malignant pleural effusion, her doctors told her she would receive chemotherapy to minimize the effusion. This would be a weekly process, for six weeks, and an excruciating one—but her doctors’ guidance led her to believe she had years left to live, and she thought the fight would be worth it if it meant spending more time with her children and grandchildren. After five out of six courses of unsuccessful chemotherapy, though, Dr. Zitter knew this wasn’t the case. “And I knew from ample experience that if I didn’t tell her she was dying now, she might never be told,” Zitter writes. “And this woman had run out of time.”

The honest conversation Dr. Zitter had with Marcia about her prognosis ended in both of them crying and holding hands. “Twenty years I’ve been doing this and it has never gotten any easier,” Dr. Zitter writes. But the following morning, after Marcia and her family had decided to set up hospice care at home, “the mood was almost celebratory.”

“We must be able to offer a variety of approaches to patients with serious and terminal illness, including palliative care and hospice.”

“She was so relieved to know there were options for care other than the chemotherapy that was ruining what remained of her life,” Dr. Zitter says. “We must be able to offer a variety of approaches to patients with serious and terminal illness, including palliative care and hospice. That way, we enable them to make choices aligned with their own values and preferences.” Marcia got “four good weeks at home,” playing Scrabble with her children, snuggling with her grandchildren in her hospital bed, and drinking good wine. She died at home in her daughter’s arms. Dr. Zitter attended her funeral—a “celebration of her life”—at which the family thanked her repeatedly for giving them the time with her that they had.

“I see so many patients, so many lives,” Dr. Zitter writes. “Very few have this opportunity to live life all the way through to the end.”

The Way Forward

The cover to Zitter’s book, Extreme Measures.

Zitter acknowledges the staggering difficulty and complexity of the issues she raises. “I have come to see that there are no clear blueprints to follow,” Zitter writes. “There are no easy answers. I cannot pursue my ICU instincts without seriously weighing my palliative care ones, and vice versa. I cannot assume that the way I treated one patient is the way I should treat another.”

Policy changes won’t be enough to make patient-centered end-of-life care become the norm in the American healthcare system. Cultural change is required, too—in medicine, in families, and in schools, “such that we begin to treat death the way we treat other important moments in life—with planning and intention, rather than a recipe book of protocols,” Zitter says. “It is going to take us all working together—patient, nurse, family and doctor. We need to ask and expect more from each other.  More honest communication, more attention to the patient’s preferences and values, less denial.”