She contracted a summer cholera. After four days she asked to see the village priest, who came and waited to give her the last rites. “Not yet, M. le Curé, I’ll let you know when the time comes.” Two days later: “Go and tell M. le Curé to bring me Extreme Unction.”

(reported in Walter, 2003, p. 213)

As you can see in this nineteenth-century description of the death of a French peasant woman, before modern medicine, death arrived quickly. People let nature take its course. There was nothing they could do. Dying was familiar, predictable, and normal. It was embedded in daily life (Wood & Williamson, 2003).

According to the historian Philippe Ariès (1974, 1981), while life in the Middle Ages was horrid and “wild,” death was often “tame.” Famine, childbirth, and infectious disease ensured that death was an expected presence throughout the lifespan. People died, as they lived, in view of the community and were buried in the churchyard in the center of town.

During the eighteenth and nineteenth centuries, death began to move off center stage when—because of fears about disease—villagers relocated burial sites to cemeteries outside of town (Kastenbaum, 2004). Then, a more dramatic change took place during the early twentieth century, when medical science successfully waged war against disease. The conquest of many infectious illnesses moved dying toward the end of the lifespan, relocating it to old age (Field, 2009). Today, with 3 out of 4 deaths in the United States occurring among people over age 65 (and often happening in our eighties and nineties), the actors in the death drama are often a marginal, atypical group—nothing like you or me.

As modern medicine took over, the scene of death shifted to hospitals and nursing homes. So the act of dying was disconnected from life. Because hospitals billed themselves as places of recovery, death became a symptom of scientific failure (see Risse & Balboni, 2013). When people took their last breaths, embedded in the recesses of intensive care, health-care workers quickly erased all signs of death’s presence, as they shrouded the body and shipped it to be spruced up in the funeral home (Kastenbaum, 2004). According to one social critic, by the mid-twentieth century, death had become the new “pornography”—disgusting, abnormal, never seen or talked about (Gorer, 1965).

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In recent decades, society has shifted course. First, doctors did a total turnaround from the practice of concealing a devastating diagnosis—never mentioning, for instance, the “C word”—in favor of telling people, “Yes, it’s cancer, and there is not much we can do.” (Now that we can meticulously track each symptom on the Internet, physicians foolish enough not to be upfront about a patient’s illness might be charged with malpractice or worse!) During the last 15 years, our health-care system has fully confronted the reality that “yes, people die,” by developing structures to ease our passage through the terminal phase of life (Risse & Balboni, 2013). We urge everyone to do their part, by documenting in writing how they want their final act to proceed.

While mainstream society stresses full disclosure and actively planning for our “final act,” death attitudes differ from group to group even in the developed world. To demonstrate this point, let’s scan the practices of a culture for whom dying remains up close and personal, but death is never openly discussed: the Hmong.

The Hmong, persecuted for centuries in China and Southeast Asia, migrated to North America after the Vietnam War and number close to a million U.S. residents today. According to Hmong tradition, mentioning dying “will unlock the gate of evil spirits,” so when a person enters the terminal phase of life, no one is permitted to discuss that fact. However, when death is imminent, the family becomes intimately involved. Relatives flock around and dress the ill person in the traditional burial garment—a black robe or suit. After death arrives, they lovingly wash and groom the corpse, preparing it to be viewed.

If, contrary to Hmong custom, the person dies in a hospital, it’s crucial that the body not be immediately sent to the morgue. The family congregates at the bedside to wail and caress the corpse for hours. Then, after a lavish four-day funeral ceremony, during which the body remains in view, the deceased is lovingly dressed in warm clothing to guard against the cold, and the feet are encased in special blue shoes for the journey to the next world. At the gravesite, the coffin is reopened for a final viewing before being permanently closed (Gerdner and others, 2007). Could you participate in these activities, by giving your relative the hands-on care that the Hmong and other societies routinely provided throughout history to prepare loved ones for the grave?

In this chapter, I’ll explore what dying is like in the twenty-first-century West, an age of open communications, extended chronic disease, and new attention to providing quality end-of-life care. First, I’ll examine the feelings of the dying person; then, turn to the health-care system; and then, return to the person to tackle those touchy issues related to controlling the timing of when we die. As you just saw with the Hmong, however, it’s crucial to remember that—just as dying pathways differ—with death and dying in general, diversity is the main theme. We all bring unique, equally valid perspectives to that ultimate event of human life.

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Question 15.1

1. You would probably have died quickly of an infectious disease.

2. You would have died in a hospital.

3. You would have seen death all around you from a young age.

4. You would probably have died at a relatively young age.

b

Question 15.2

slowly and erratically; an age-related chronic disease

Question 15.3

Amanda, because today we openly discuss death, and are making efforts to promote dignified dying.