CAMBRIDGE, Massachusetts — From the intensive care unit to the hospice, Dr. Jessica Nutik Zitter has long been an eyewitness to the end-of-life debate in the US. Now she aims to refocus the conversation.
In her new book “Extreme Measures: Finding a Better Path to the End of Life,” Zitter addresses the tensions between using machines to preserve patients’ lives and treating them through palliative care.
Her goal is “to ensure the death that you want,” she told The Times of Israel in an interview in Harvard Square. “I really believe that people have the right to choose their own death. The main problem is that people are not informed. Usually, it’s a default death, by protocol, as we continue to ramp up technology.”
She discusses the choice between what she calls “the end-of-life conveyor belt” and palliative care, and writes about how patients and their families — including her own extended Jewish-American family — have dealt with approaching death.
“If it’s a high-tech death, [they should know] what it’s going to look like — the prognosis, the benefits, the burdens,” she said. “If they still want to do it, God bless them. Most people don’t. The honest truth we hear is that they want to die with family members.”
A graduate of Stanford University and Case Western Reserve University Medical School, Zitter is trained in pulmonary/critical care medicine and palliative care medicine, and practices at Highland Hospital in Oakland, California. In 2012 Highland had the most-trafficked emergency room in Alameda County. Zitter was also featured in the Oscar-nominated emergency-room documentary “Extremis.”
In her book, Zitter defines palliative care as “an interdisciplinary approach to managing suffering in the context of medical illness, whether physical, emotional, familial or spiritual,” and adds that “for patients approaching the end of life, its offerings are often critical.”
Zitter presents palliative care as an alternative to a painful death — over 50% of Americans die in pain. She cites studies indicating that palliative care and hospice prolong the lives of patients.
And she mentioned a 1996 support trial “that showed the dismal state of dying in America… We were shocked at the rate of mechanized deaths, suffering, poor communication, lack of knowledge. It was grisly. Palliative care arose from that point.”
‘We were shocked at the rate of mechanized deaths, suffering, poor communication, lack of knowledge’
She also credits billionaire philanthropist George Soros, “who decided to get into [the] end-of-life [movement] after bad experiences with his parents dying.”
Soros’s Project on Death in America (PDIA) funded training in end-of-life care for over a decade. Zitter was part of PDIA’s sixth year. She had already participated in a support trial at Case Western Reserve University. In 2003, she was part of a similar trial program at University Hospital in Newark sponsored by the Robert Wood Johnson Foundation.
“I was placed in the right place at the right time,” Zitter said. “I had to put this together for people… It almost feels beshert [preordained].”
But she absorbed gut-wrenching experiences along the way.
She chronicles the end-of-life struggles of her husband’s uncle, Barry Golomb, the second US servicemember to enter Dachau during World War II.
“[It was] one of the most traumatic events you can imagine,” she said, adding that “his family came from all over Europe. Who knows [if any were in the camp]?”
After practicing law until age 88, once-macho Uncle Barry “started winding down” and grew “unstable,” Zitter said. But he would not talk about end-of-life issues, trusting “in the model of medicine and the doctor knowing everything,” she said, “that the doctor knows and cares about you. That was before machines. You could be trapped alive.”
As a family member, she witnessed his deteriorating condition. He suffered “a massive heart attack” on an ICU breathing machine, she said. Ultimately, his son Wes decided to remove his breathing tube.
“Wes finally said no,” Zitter said. “He received a lot of support from all of us.”
Zitter also writes about “Mrs. Z,” her third case as a palliative care doctor, an 82-year-old woman dying of pneumonia. Zitter discovered that she had “a line of numbers tattooed on the inner side” of her forearm, and that she “had been imprisoned at Auschwitz, where she had fallen victim to Dr. [Josef] Mengele’s insane ‘experiments’ conducted on twins.”
Mengele had removed Mrs. Z’s uterus, leaving her with chronic medical issues. He had killed her twin sister; no one else from her extended family survived the Holocaust. She married a fellow survivor, who predeceased her, leaving her “childless and alone,” Zitter wrote.
Mrs. Z’s tragic life, and Zitter’s own family connections to the Holocaust, led the doctor to reconsider advocating palliative care.
“Many of my family died in the Holocaust,” Zitter said. “I saw in that woman such a crazy connection… I would go in [seeking] a peaceful, easy death, but I panicked. She represented so many things to me… aspects of injustice. I just wanted to give her everything she deserved and more, to save and care for her, show she mattered.”
Zitter used a bilevel positive airway pressure mask to help Mrs. Z breathe, but the patient kept pulling it off. Zitter made the difficult decision to remove the mask. Mrs. Z died four hours later, “looking comfortable,” Zitter wrote.
“At the end, I look back on the case, and I worry I made it worse,” Zitter told The Times of Israel. “Emotions, and your own personal history, can cloud your thinking.”
She added that at the time, “I was still so in the ICU mode. It was the only way I could imagine justice.”
Zitter describes palliative care as “a new paradigm.” Some say the medical paradigms are beginning to shift.
‘You need a long-term view of the world on whether the glass is half-full or half-empty’
“You need a long-term view of the world on whether the glass is half-full or half-empty,” said Ezekiel Emanuel, the chair of the Department of Medical Ethics and Health Policy at the University of Pennsylvania and a former Obama Administration health official. “We tend to focus on half-empty, less on half-full.”
“When you’ve been around as long as I have and seen end-of-life care over 30 years, I take the long way. Many of us feel it’s not [moving] fast enough. On the other hand… to deny that things have changed is counterproductive and factually untrue,” said Emanuel.
In a sign of change, Zitter held a “Death Cafe” at her synagogue, the Modern Orthodox Beth Jacob Congregation in Oakland, several years ago.
“They said, ‘We are really interested in having you come in and speak,’” she recalled. “I was happy to do it.”
“Modern medical ethics… isn’t necessarily in sync with the halachic approach to death. According to traditional Jewish law, you’re not allowed to take away anything keeping a body alive. That’s not how I feel,” she said.
And, she added, “I’m pleased my synagogue and rabbi are very progressive people who want to present both sides.”
“We need more,” Emanuel said when asked about his view of palliative care. “There are a lot of people who have symptoms towards the end of life, and not only the end of life, that are alleviated by a constellation of innovations we know how to deploy. In general, it’s not frequent enough.”
“From an oncology perspective, the moment someone is not doing well from a metastatic disease that will kill them eventually, and they spend more than half their time in bed, those are times for palliative care. There’s no need to wait till the last few days,” he said.
Emanuel and Zitter were asked separately about the possibility of a miraculous recovery.
“They’re pretty rare,” Emanuel said. “There are some families that want it. But there are some conditions where it’s just not going to happen.”
‘I am completely against euthanasia’
Zitter said that of the thousands of patients she has cared for, “under 10” have made such a recovery — “maybe five stick out.” She estimated the odds might be “one in 10,000, one in a thousand.”
She added, “An important piece is the odds. When it’s just a lottery ticket, okay, you lost $5. It’s the odds of losing, not getting a good outcome, taking a chance by a lifetime on machines for a miraculous recovery. It’s not just losing $5 to $10 but committing yourself to a life of suffering on machines.”
She drew a clear distinction between palliative care and euthanasia.
“I am completely against euthanasia,” she said. “I’ll put it right out. I do not approve. It’s not something I ever want to do. It’s not why I became a doctor. This is really an important topic.”
“As a palliative care doctor, there is nothing here about removing autonomy or putting people to death,” she said. “It’s the exact opposite. We’re about enhancing autonomy, giving a choice to people to take their lives into their own hands and decide how they want to live.”