As a long-time hospice volunteer, Jennie Dear has helped countless patients, families, and caregivers cope with the many challenges of the dying process. Inspired by her own personal journey with her mother’s long-term illness, Dear demystifies the experience of dying for everyone whose lives it touches. She spoke to doctors, nurses, and caregivers, as well as families, friends, and the patients themselves. The result is a brilliantly researched, eye-opening account that combines the latest medical findings with sensitive human insights to offer real emotional support and answers to some of the questions that affect us all.
Does dying hurt?
A frank discussion of whether dying has to be painful—and why it sometimes is even when treatment is readily available.
Is there a better way to cope with dying?
Comforting stories of people who found peace in the face of death , and some of the expert methods they used for getting there.
The last few hours: What does it feel like to die?
Powerful glimpses from dedicated professionals into the physical experiences of people in their final moments—plus comforting words and insights from those who are there to help.
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existential slap: a fatal diagnosis
The penalty we pay for believing that death comes onlyto other people is that it takes us by surprise.
— AVERY WEISMAN
I DON'T KNOW exactly when my mother, who eventually died of metastatic breast cancer, encountered her existential crisis. But I have a guess. My parents waited a day after her initial diagnosis before calling my brother, my sister, and me. They reached me first.
My father is not a terribly calm man, but he said, very calmly, something to this effect: "Your mother has been diagnosed with breast cancer."
There was a pause, and then a noise I can best describe as not quite a sob or a yell, but feral and animal-like. It was so uncharacteristic that I didn't know then, and I still don't know for certain, whether the sound came from my father or my mother.
I think that was the moment of her — and their — "existential slap," the instant when a person really comprehends, on a gut level, that death is close.
Palliative care pioneer Nessa Coyle coined the phrase to describe the experiences she witnessed in people with life-threatening illnesses. In her work as a nurse, Coyle noticed how tightly her patients clung to the belief that their diseases wouldn't kill them. She watched patients redefine what was most important in their lives, and what they hoped for as their health declined. Those changes in expectations were a process, something that happened over time. "But the actual realization that you're going to die, you're not going to beat this one — for many people, it seemed to me, came suddenly," she says. "Suddenly, they realized: This is it."
Stephen was first diagnosed with prostate cancer in the early 1990s. The cancer was small and contained, so he decided against surgery or the relatively imprecise radiation treatments available at the time. Instead, he and his wife traveled to New York, San Diego, Los Angeles, and Scottsdale for a medley of treatments from leading prostate specialists and naturopaths. For years, the cancer remained stable, but it began to gradually spread and grow. Then, in 2013, Stephen's brother and son died within a week of each other, and his own health took a plunge. "I think that might have been the first glimpse of his own mortality, but I don't know that," says his wife, Jane. Stephen began seeking more aggressive treatments — radiation, an expensive medication prescribed by a doctor in California, a surgical procedure in Los Angeles. The disease continued to progress, and he continued to stave it off.
Then, in 2015, the couple made a memorable visit to the doctor's office: A gastroenterologist asked Stephen to lie down on the examination table. "He said, 'I think this is a tumor in your liver,'" Jane says. "And I remember the look on [Stephen]'s face. He was sitting there looking at me, and I was looking at him and he looked like a deer in the headlights. I'd never, ever seen that before ... we just stared at each other. And I will always remember that."
While most people recognize on some level that death is inevitable, we don't really believe it, says Virginia Lee, a researcher and nurse who works with cancer patients: "At least in Western culture, we think we're going to live forever. We know on an intellectual level that we're not Superman, that we are not immortal. Kids learn that at an early stage, when pets die, or plants die, but that's at an intellectual level." Lee's patients often tell her they'd understood that death was real but thought of it as something that happened to other people — until they received their diagnosis. "The existential slap occurs when the reality and inevitability of one's own personal death sinks in," Coyle writes. "This awareness precipitates a crisis for most individuals."
Researchers have given the crisis other names: existential plight, or existential turning point. Crisis of knowledge of death. Ego chill. They say most patients with a terminal disease experience it, and it's not limited to one culture — people from different nations and different ethnicities have described it, although patients in places like the United States may be more susceptible simply because we have less exposure to death. The crisis can be terrifying and overwhelming. The moment of the existential slap usually happens, as it did for my mother, close to when doctors break the news.
"I've heard from cancer patients that your life changes instantly the moment the doctor or the oncologist says it's confirmed that it is cancer," Lee says. Doctors usually focus on events in your body: You have an incurable disease, your heart has weakened, your lungs are giving out. But the immediate effect is psychological. Gary Rodin, a palliative care specialist who was trained in both internal medicine and psychiatry, says this is the "first trauma" — the psychological and social effects of the disease.
The shock of confronting your own mortality can also happen at other times or in other ways, Coyle says: Maybe you look at yourself in the mirror and suddenly realize how skinny you are, or notice your clothes no longer fit well. Maybe you notice the way someone looks at you and recognize there's a change. "It's not necessarily verbal; it's not necessarily what other people are telling you," Coyle says. "Your body may be telling you, your soul may be telling you, or other people's eyes may be telling you."
WHY IS IT A CRISIS?
People are used to being vulnerable in normal existence — we know how to cope with that (most of us, most of the time). But that ability to cope falls sharply with the shock of finding out an illness is terminal. E. Mansell Pattison, one of the early psychiatrists to write about the emotions and responses of dying people, explains in The Experience of Dying why this realization marks a radical change in how people think about themselves:
We anticipate a certain life-span within which we arrange our activities and plan our lives. And then abruptly we may be confronted with a crisis — the crisis of knowledge of death. Whether by illness or accident, our potential trajectory is suddenly changed.
People are able to create that sort of trajectory because we have a set of expectations and assumptions about life in general, a sense of the world that makes it possible for us to make it through the day, and plan for the future. These expectations are crucial for normal mental health, but they're based on a set of illusions that Lee says include the following: "overly positive beliefs about the self and expectations that there will always be tomorrow, that good people deserve good things happening to them, that it is possible to plan ahead into the future, and that the future looks bright." Most people don't examine these illusions until something deeply disturbing happens — something like being diagnosed with cancer. And when people learn they have a terminal disease, the illusions often come crashing down. "When cancer strikes, the belief system[s] that once provided a sense of stability, familiarity, and security are called into question."
WHAT DOES IT FEEL LIKE?
In a small 2011 Danish study, five patients with incurable esophageal cancer reported that after their diagnosis, their lives seemed to spin out of control. The patients wondered why they had received a fatal diagnosis. They asked, "Why me?" "Why now?" "What's going to happen?" "Am I going to die?" Some experienced despair and hopelessness; they felt their worlds were falling apart. They worried about the future, about their own grief. "I didn't care about anything," one patient said. "I had just about given up." Another said, "I felt like I was slipping into a depression. Even the simplest tasks were overwhelming. I couldn't handle the future."
Some people say they feel depression or despair or anger, or all three, Lee has found. They grieve. They grapple with a loss of meaning. A person's whole belief system may be called into question because dealing with treatment and the disease itself will affect almost every aspect of life.
During this crisis, a person's sense of anxiety can be close to intolerable. That's because patients are confronting a loss of identity and meaning. It makes sense that a person's first responses to a fatal diagnosis might include despair, anger, denial, meaninglessness, or depression.
But researchers also say the crisis is a phase that patients usually pass through — they can't remain long in this state of acute anxiety. Patients usually reach a peak of anxiety, which then subsides. In the 1970s, two Harvard researchers, Avery Weisman and J. William Worden, did a foundational study on existential plight, interviewing newly diagnosed cancer patients multiple times over the course of several months. After patients were diagnosed, the researchers found, they had significant, measurable changes in their emotional responses and understanding of the people and world around them. For almost all the patients in the study, existential concerns were the most important focuses in their lives, overriding concerns about any other consequences of their disease — physical symptoms, financial impacts, work, religion, or family.
The researchers also measured how long the existential plight lasted for patients diagnosed with a serious or life-threatening disease. They found that it usually began with the diagnosis and continued about two to three months, or approximately a hundred days.
In the beginning — soon after a diagnosis with a life-threatening disease — it's normal for patients to feel a high level of distress, Lee says. Like Weisman and Worden, she's found that that distress usually diminishes over the next three months.
Whenever uncertainty peaks and a dying person feels as if her life is threatened, her distress also increases. Those peaks tend to occur at the beginning of a diagnosis, at the start of treatment, such as chemotherapy, and at the start of surgery, for those patients who have it. Research has found that later peaks of anxiety and distress are not usually as severe as the first wave.
Researchers note that the crisis doesn't affect everyone in the same way. For some patients, the moment of recognition isn't deeply disturbing and it passes quickly. For others, finding out they have a serious or fatal disease reignites old emotional or social issues — unresolved grief from a divorce, or disappointment about not achieving one of their life dreams. Or they find that unrelated problems suddenly need new and different solutions and strategies: Strains in a relationship that were being ignored may need to be addressed directly through counseling, or finding a different place to live may have new requirements.
For many patients, the stunning recognition of their own mortality evaporates into denial for periods of time that can be jarring to family members or other observers.
THE REALIZATION THAT YOU'RE MORTAL MAY COME AND GO
"I don't know why I'm here — I'm not very sick," one patient at Mercy Hospice House, a residential hospice in Durango, Colorado, told me. "I think it's because my wife has the flu; maybe she needed a break." Another hospice patient kept saying he knew he'd whip his advanced cancer, just as he'd beaten other diseases or injuries in the past. He died a week later. Other patients sometimes chatter away blithely about plans to attend events or travel months or years in the future, as if there's no doubt they'll still be alive and able to participate.
Stephen, the man who lived for years knowing he had prostate cancer, never seemed to fully accept or understand that he had a fatal condition, even after the doctor told him his cancer had spread. "The existential slap? He didn't get it," says his wife, Jane. He may have had that deer-in-the-headlights moment in the doctor's office, but his existential crisis was brief and passed quickly. When a biopsy confirmed that the tumor was cancerous, Jane asked the doctor what he would do if he were in Stephen's place. He wouldn't waste his time seeking out costly further treatments that didn't really work, the doctor said. He encouraged Stephen to enjoy the time he had left with his family.
The conversation infuriated Stephen. He was a fighter and he'd wanted the doctor to suggest a potential miracle cure. He began searching for even more aggressive treatments. When his wife said she wouldn't take Stephen back to California to have his liver mapped — both the trip and the procedure seemed unnecessarily extreme and exhausting, she says — Stephen had a friend drive him there. Later, after the disease had weakened him and he was spending most of his time in bed, friends would ask to visit. Stephen refused to see most of them. "They only want to come here because they think I'm dying," he told Jane.
When Stephen's symptoms required more help than Jane and part-time caregivers could provide, he finally enrolled in hospice. "You know what this means, to be on hospice?" Jane remembers asking him.
"Yeah, but I can get off anytime," he told her. A month or so later, he did leave hospice for two weeks so he could pursue curative treatments.
"I knew he was dying for a long time, and that's what was hard, I think," Jane says, because her husband still wouldn't acknowledge that fact. The weekend before Stephen died, a hospice nurse was at their home checking his vital signs. The nurse looked at him and said, "You know, you're in the dying process now." Jane remembers asking, "Are you hearing her?"
"Yes, I heard her," Stephen said. After the nurse left, Jane asked again, "Did you hear what she said?"
"That's just her opinion."
Another hospice patient with whom I spent four hours a week one memorable month certainly understood, somewhere in his mind, that he had a fatal brain tumor. When he'd undergone an initial brain surgery, his doctors told him the tumor would probably return. If it did, they said, there was nothing they could do to stop its growth. The tumor had indeed come back.
On our third visit, he asked why I was spending so much time with him. I told him I was there because I enjoyed our visits, but also because I was a hospice volunteer. I watched as he tried to assimilate the implications of being enrolled in hospice, although he'd certainly been informed before, multiple times by multiple people. Then he changed the subject. In our talks, his brain kept circling around the fact that his condition was fatal. When he discussed his tumor, he would say he was hoping for a miracle, in a tone that suggested he expected a miracle. And he would tell me his doctors claimed his tumor couldn't be cured, as if their medical opinions were suspect.
Even though this patient, like Stephen, spent most of his time in a state of denial, both probably had moments when they faced the truth. Stephen's wife recalls the few minutes in the doctor's office when he seemed to really grasp that he was dying, but the moment passed quickly. Palliative care doctors once believed patients were either in a state of denial or a state of acceptance. Now, Rodin and other researchers think people are more likely to move back and forth between those states. One researcher says a pendulum is a good metaphor for the way people face death, as they move back and forth between extremes of acceptance and denial. Weisman called this state "middle knowledge." He describes a patient who had accepted his own death, at least in the abstract. But when the patient experienced a period of stress, he began discussing future plans that would have been impossible because of his fatal disease. "Patients seem to know and want to know, yet they often talk as if they did not know and did not want to be reminded of what they have been told," Weisman writes. Some patients with a terminal disease seem to face an existential crisis, then return to a state of denial, and then double back to the crisis — perhaps more than once.
Weisman and Worden describe another case they say isn't unusual: A woman was told of her cancer diagnosis, only to report to interviewers that she didn't know what it was — and then make it clear she wasn't interested in receiving a diagnosis in the near future.
Still, it's almost impossible to maintain a steady sense of denial. The idea that you're dying doesn't stay at the forefront of consciousness, but once you've faced that fact, it remains somewhere in the background. Middle knowledge means that patients have some degree of awareness and insight about their condition, says Harvey Chochinov, a Canadian psychiatrist who specializes in palliative care. "They understand they have a relatively short life expectancy," he says, and yet there's a part of them that continues to need to maintain the status quo, and "the expectation is that there is a future."(Continues…)
Excerpted from "What Does It Feel Like to Die?"
Copyright © 2019 Jennie Dear.
Excerpted by permission of KENSINGTON PUBLISHING CORP..
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Table of Contents
Chapter 1 Existential slap: a fatal diagnosis 7
Chapter 2 Trajectories: patterns in how we die 19
Chapter 3 After the diagnosis: in the land of living/dying 39
Chapter 4 Going home: where people die 57
Chapter 5 Does dying hurt? 81
Chapter 6 Coping: a map for how to die well 100
Chapter 7 Growth and legacies 123
Chapter 8 Checking out early 141
Chapter 9 The brain and dying 166
Chapter 10 The last few hours 186