I Hate Life And Want To Die – My mother and I sat across from the hospice nurse at my parents’ home in Colorado. It was 2005 and my mother had reached the end of her treatments for metastatic breast cancer. A month or two earlier she had been able to take the dog on daily walks in the mountains and travel to Australia with my father. Now she was weak, exhausted from the disease and chemotherapy and pain medication.
It was my mother who, with the doctor’s blessing, had decided to stop pursuing the dwindling chemotherapy options, and she had been the one to tell the doctor to call hospice. Still, we were not prepared for the nurse’s question. My mom and I exchanged looks, a little shocked. But what we felt most was a sense of relief.
I Hate Life And Want To Die
During six and a half years of treatment, although my mother saw two general practitioners, six oncologists, a cardiologist, several radiation technicians, nurses in two chemotherapy wards and surgeons in three different clinics – as far as I know, no one had spoken to her about what would happen when she died.
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There is good reason. “About the last two weeks until the last breath, somewhere in that interval, people become too sick, too drowsy or too unconscious to tell us what they’re experiencing,” says Margaret Campbell, a professor of nursing at Wayne State University who has work in palliative care for decades. The way death is talked about tends to be based on what family, friends and doctors see, rather than accounts of what it actually feels like to die.
James Hallenbeck, a palliative care specialist at Stanford University, often compares dying to black holes. “We can see the effects of black holes, but it is extremely difficult, if not impossible, to see inside them. They exert an increasingly strong gravitational pull the closer you get to them. As one crosses the ‘event horizon’ the laws of physics apparently begin to change.”
Does it feel like dying? Despite a growing body of research on death, the actual physical experience of dying—the final days or moments—remains shrouded in mystery. Medicine is just beginning to look over the horizon.
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Until about 100 years ago, almost all death happened quickly. But modern medicine has radically changed how long the end of life can be extended. Now, many Americans who have access to medical care die gradually from long-term illnesses, such as most terminal cancers or complications from diabetes or dementia, rather than quickly from, say, an agricultural accident or influenza. According to the Centers for Disease Control and Prevention’s latest figures, Americans are most likely to die from heart disease, cancer or chronic lung disease.
For many who die gradually, there is a final, rapid slide that occurs roughly during the last days of life—a phase known as “active death.” At this time Hallenbeck enters
, his guide to palliative care for doctors, people tend to lose their senses and desires in a particular order. “First the hunger disappears and then the thirst. Speech is lost thereafter, followed by vision. The last senses to go are usually hearing and touch.”
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Whether dying is physically painful or how painful it is seems to vary. “There are some types of conditions where pain is inevitable,” says Campbell. “There are some patients who just get really, really old and just go away, and there’s no reason for that.” Also, having a disease associated with pain does not mean that you will necessarily suffer a difficult death. Most people who die of cancer need pain medication to keep them comfortable, Campbell notes—and the medication usually works. “If they get good, comprehensive pain management, they can die peacefully,” she says.
When people become too weak to cough or swallow, some begin to make a noise at the back of the throat. The sound can be deeply disturbing, as if the person is suffering. But it doesn’t feel like that for the dying person, as far as the doctors can tell. In fact, medical researchers believe that the phenomenon – which is commonly called a death rattle
Ultimately, because most people lose consciousness or awareness in the last hours or days, it is difficult to know for sure how much they are suffering. “We generally think that if your brain is really in a comatose state or you’re not very responsive, your perception — how you feel about things — can also be significantly reduced,” says David Hui, an oncologist and palliative care specialist. who researches the signs of approaching death. “You might not even realize what’s going on.”
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A week or two after we talked to the nurse, my mother sank into a state where she was rarely conscious. When she was awake, only the most basic part of her was there: the part that told her legs to move to get her to the bathroom, the automatic steps of brushing her teeth and wiping the sink afterwards. Her thoughts turned away from the children and her husband for the first time.
I wanted to know what she thought. I wanted to know where her mind was. Being at the bedside of an unresponsive dying person can feel like trying to figure out if someone is home by looking through heavily curtained windows. Is the person sleeping, dreaming, experiencing something supernatural? Are her thoughts gone?
For many dying people, “the brain does what the body does in that it starts to sacrifice areas that are less critical to survival,” says David Hovda, director of the UCLA Brain Injury Research Center. He compares the breakdown to what happens in aging: People tend to lose the ability to do complex or executive planning, learn motor skills, and—in what turns out to be a very important function—inhibition.
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“When the brain starts to change and starts to die, different parts get excited, and one of the parts that gets excited is the visual system,” explains Hovda. “And this is where people start to see the light.”
Recent research points to evidence that the sharpening of the senses that some report also seems to match what we know about the brain’s response to dying. Jimo Borjigin, a neuroscientist at the University of Michigan, first became fascinated by this topic when she noticed something strange in the animals’ brains in another experiment: Just before the animals died, neurochemicals in the brain suddenly increased. Although scientists had known that brain neurons continued to fire after a person died, this was different. The neurons secreted new chemicals, and in large quantities.
“Many cardiac arrest survivors describe that during their unconscious period they have this amazing experience in their brain,” says Borjigin. “They see light, and then they describe the experience as ‘realer than real’.” She realized that the sudden release of neurochemicals could help explain this feeling.
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Borjigin and her research team tried an experiment. They anesthetized eight rats and then stopped their hearts. “Suddenly, all the different areas of the brain were synchronized,” she says. The rats’ brains showed higher power in different frequency waves, and also what is known as coherence – the electrical activity of different parts of the brain working together.
“If you’re focusing your attention, doing something, trying to figure out a word or trying to remember a face — when you’re doing high-level cognitive activity, those functions increase,” says Borjigin. “These are well-used parameters for studying human consciousness in awake people. So we thought that if you’re awake or excited, similar parameters should also go up in the dying brain. Indeed, it did.”
During the last few weeks, when my mother’s mind seemed to wander elsewhere most of the time, she would sometimes raise her arms in the air and pick at invisible objects with her fingers. Once I took her hands in mine and asked what she had done. “Put things,” she replied, smiling dreamily.
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This half-dreaming, half-awake state is common in dying people. In fact, researchers led by Christopher Kerr at a hospice center outside of Buffalo, New York, conducted a study of the dreams of dying people. Most of the patients interviewed – 88 percent – had at least one dream or vision. And those dreams usually felt different to them than normal dreams. First, the dreams seemed clearer, more real. “The patients’ dreams before death were often so intense that the dream became waking, and the dying often experienced them as a waking reality,” the researchers write in
72 percent of patients dreamed of being reunited with people who had already died. 59 percent said they dreamed of getting ready to travel somewhere. Twenty-eight percent dreamed of meaningful experiences in the past. (Patients were interviewed every day, so the same subjects often reported dreams about multiple subjects.)
For most patients, the dreams were comforting and positive. The researchers say that the dreams often helped to reduce the fear of death. “The predominant quality of dreams/visions before death was a sense of personal meaning, which often had emotional significance for the patient,” they report.
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During patients’ last hours, after they have stopped eating and drinking, after they have lost their sight, “when most dying people
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