How do we face death, and how do we confront the choice between dying and death? How do we try to stop death, and how do we embrace the process with joy? Death is so often dealt with in books, movies, music, and speech that we tend to form visions or stereotypes about it, and even romanticize it. As Ann Neumann puts it in her book, "The Road to Dying: Medical Assistance for the Dying in America," the so-called romantic death refers to the kind of sublime, wonderful, and peaceful death that is often portrayed in movies or novels, such as in the 2004 American romantic feature film, "The Notebook".
When the end of life comes, how to choose and face death?
Stills from the movie "The Notebook".
In this movie, a man who has dementia
(Alzheimer's disease)
to his wife keeps going back to the time when they fell in love. The couple is now elderly, and the husband's ramblings are a recitation of the wife's notes in a notebook about their **** life together, old cars, frugal living, old family stories, and so on and so forth. The love between these two people is so deep that the wife's memory is briefly restored, and the movie ends with both of them lying down on the bed, holding hands, and saying goodbye to the world in a peaceful sleep. Beautiful images of such scenes, Ann Neumann said, often appear as posters on the walls of hospitals and hospices, in the offices of health workers, in cancer centers and on Web sites that promote the concept.
People are looking forward to this kind of end of life, but they are also worried that such a prospect may not come true -- that, realistically, it is not as easy as it seems to be to deal with death calmly, and to do so peacefully, and that the relationship between death and survival is much more complex than we might expect.
The following is an excerpt from the book The Road to Resignation: Medical Assistance for the Dying in America by Ann Neumann, which has been published with permission from the publisher.
When the end of life comes, how do you choose and confront death?
The Road to Resignation: Medical Assistance for the Dying in the United States, by [American] Ann Neumann, translated by Wang Hui, May 2020 edition by Life-Reading-New Knowledge.
The real process of dying is no longer common
One of the reasons the real process of dying is often unknown is that we no longer see it as common. In today's world, such things as death from plague, infections from small wounds, and common pediatric diseases have been eliminated from much of the planet. People's average life expectancy has increased by 30 years over the past century. in 1900, Americans typically lived past the age of 47, reaching 59 as we moved into the 1930s, and by the year 2000, the expectation was closer to 80 years old. The infant birth mortality rate alone fell from 56 per 1,000 in 1935 to 7 per 1,000 in 2000. The overall improvement in Americans' health care has made what would have been the direct experience of being exposed to the death of a loved one at home no longer a personal experience for many.
Today, 80 percent of Americans die in a variety of health care settings, including hospitals, nursing homes, and clinics. Even if you see a deceased or dying person, it is mostly just a short visit in a hospital room, while the patient's medical care, changing bedding and cleaning process, are left to the medical staff, and others are just there to walk through the process as if they were on a tour. All aspects of death that are considered unpleasant - perhaps on the basis of their suitability for the movie screen - take place behind a drawn curtain. Passing away becomes a specialized process, far enough away from loved ones and friends to make it less real for them.
When the end of life comes, how do you choose and face death?
Stills from the movie "The Mortician".
This has not been the case for a long time. Three generations ago, death often happened right at home, and it was even more common in rural areas. My hometown is in Lancaster County, USA
(Lancaster County)
and I learned about seeking medical care there from the words of older generations. My ancestors were Mennonites who moved here to farm for 170 years before the first hospital was opened. My great-grandfather, whose name was Enos Harnish
(Enos Harnish)
, was the first in his family to drive an automobile and the first member of the family not to die at home. He died in the hospital, but before moving there, he developed edema in his lower extremities - a condition known today to be caused by congestive heart failure - and was confined to his home for some time before being admitted to the hospital, where he died shortly thereafter. His daughter Elizabeth
(Elizabeth)
died of the same condition, an aunt who lived to the ripe old age of 90 and died with a head of curly hair and only slightly graying. She died sitting with her swollen legs on a bench in her home, which still maintains Mennonite customs, and despite her illness, she had refused to take her medication and was always quacking and laughing as she had always done. She thought she had lived a pretty good life.
In the early 1900s, doctors in the U.S., especially around Lancaster County, were not much better than witches. They roamed the farms in all directions on horseback, with a black leather pocket hitched to their saddles that contained only a few simple medical supplies. These were not only few and far between, but also irregular, such as a few oddly named herbal infusions
(in small black bottles)
and smelling salts and whatnot, and sometimes a large bottle of whiskey spirits. Later, they brought along the emerging smallpox vaccine, and this and that kind of laborious stuff that was said to be able to deal with scurvy and edema, and didn't have any antibiotics - it would be another 60 years or so before they came out. After the mid-20th century, opium began to be recognized as the standard analgesic for dealing with end-of-life pain, but controlling it from abuse became a major problem again.
As life progressed, we stopped pickling our own pickles and making our own jams; similarly, as medicine progressed, we stopped caring for the dying and witnessing death up close. Since the end of the 19th century, the opportunities for direct contact with death have greatly diminished, and our willingness to recognize the journey has become ever more urgent. It's much like what the American writer Michael Lesy said in his novel The Forbidden Zone: "
(The imagination of death)
has intensified the desire to know it." I have had such a longing since my father's death, and I can see from the inquiries of my friends that they have the same desire. Their questions were not about religious concepts or supernatural phenomena, such as where people go after death or whether my father believed in God, but about the specifics of death: the cause of his death, whether he had been weak for a long time before his death, and how he realized that he was going to die. They listened attentively to the details of the changes in the father's physical condition, but did not feel comfortable asking about the specifics of the body's organs, the condition of the skin, or how he breathed his last.
There is a distance between people's awareness of death and its actual arrival. Bridging that distance can cause shock or injury. The only way to mitigate it is to take the time to be close to people who are nearing the end of their lives. Knowing how death happens to others, one recognizes how it will happen to oneself. Understanding the condition of death, while it strips away the romantic trappings of the phenomenon, makes it easier to understand and accept its arrival. Yet despite the desire to recognize death, the medical community's behavior around it has been an impediment to its realization, and this has affected the benefits we can derive from understanding it.
Medical advances have opened up new and uncharted territory in ethics
At the southeastern tip of Manhattan, New York City, there is a hospital with a hospice unit. On the unit's workbench, taped to a table, is a list of all the patients, so nurses can keep track of them and update them on their lives and deaths - every now and then, a name is crossed out and a new one added. There was also a pad on the table for volunteers to fill in their work records. On one occasion, for example, I read: "Mrs. Smith ate two tablespoons of applesauce. Enjoyed talking about her family. Showed me pictures of her grandchildren."
Prompts attached by the clinic's coordinator often appear on the mat boards, reminding volunteers not to share a patient's health information with them or their families - people who may not know the end-of-life information and may not want to know it. This shielding is not new, but it is not without controversy and varies from hospice to hospice depending on the region and the age, ethnicity, social background and religious beliefs of the patient. Whenever a person dies and the body is removed, all the wards on the same side of the room as the deceased's are closed so that the patients do not see the process. Patients don't stay in the hospice for long, only a week or less, because they have been dealt with previously in other parts of the hospital, but there for therapeutic purposes, and are brought here only when the treatment doesn't work.
Talking to patients about death is not easy. For a doctor to talk about it is to admit that he or she can't do anything about it, to say that he or she will never do anything about it, and to mention to a patient that going to a hospice means going there to wait for him or her to die, which is why many doctors won't do it. A major problem with the medical profession's avoidance of the issue is that patients in this condition feel that they should not have to stop asking for new experimental therapies and new medications. Family and friends will plead with them to "don't let go of your hand" and not to give up trying; relatives, who have suffered from the concomitant effects of incurable diseases for so long, may not be in the right frame of mind or knowledgeable enough to think of the right response options.
While the outcome may be ineffective, stopping treatment and removing life support equipment can feel like a decision to end a loved one's life and a betrayal to the patient's family, and to the patient themselves, it can feel like a declaration of self-loathing, a refusal to cooperate, and a sense of frustration that can lead to suicidal ideation. However, the continuation of futile medical treatment will torture the body, destroying physical ability, causing financial burden, coupled with repeated clinical depression triggered by every contact with health care personnel. It should make the patient think: If all this experience of being away from home, unconscious, weakened by chemotherapy, and having an oxygen tube inserted into their body can be considered the good way, what about the bad way?
Death used to be thought of as the total cessation of heartbeat and respiration, with loss of brain function. This definition changed for the first time in the 1970s as a result of a revolutionary process in the medical field. Medical innovations, such as artificial respiration and defibrillators, made it possible to extend the work of the heart and lungs indefinitely, and the definition of death has since eliminated both of them, leaving only brain function. But no one - not doctors, not lawyers, not patients, not their families - knows the exact definition of this criterion. For centuries, the heartbeat and its accompanying pulse have been associated with life, with rhythms that are culturally, socially and familially linked.
When the end of life comes, how do you choose and face death?
Stills from the movie "The Mortician".
Ancient Egyptians mummified bodies by removing their internal organs but leaving the heart in place, believing that the dead would have an afterlife. In the 17th century, there were those who believed that the soul resided in the muscular cavity of the heart, and the 18th-century English poet William Blake
told that the heart "dwells in the center of the world as the sun in the heavens". For knowledge, we have to concentrate on the search; on the mastery of the situation, we say that the heart or the heart of the countless; on the situation that we are concerned about, we say that we can not rest assured ...... Obviously this is the view that if the heart in the beating, the person is alive; once it is no longer so, the person is already dead.
The brain is completely different from the heart, both mysterious and complex. It has three basic components, each of which performs a number of specific functions, and each of which depends on the other. What are the functions of the brain that determine whether a person is alive or not? Is it all of them? On which parts of the brain does a human being depend to become a human being and not some other organism? Where are the functions of the brain, such as being endowed with nature, being able to laugh, and being able to recognize others? How can these functions be measured? The medical advances mentioned in the previous paragraph, coupled with the implementation of CPR, the use of emergency telephone systems, and the concentration of people in cities, have resulted in the rapid availability of emergency care, saving countless lives.
However, it has also led to new and uncharted territory in the field of ethics. In some cases, while electric shocks or repeated compressions of the chest may result in the restoration of the heartbeat and the re-expansion of the lobes of the lungs by the forced inflow and outflow of air
(except that they often result in broken ribs in the infirm and the elderly)
,
If the person is not oxygenated within four minutes, he or she suffers brain damage, the extent of which is difficult to measure and often impossible to recover. The extent of the damage is difficult to measure and recovery is often impossible. In this case, the patient's "life" is dependent on technology, and the decision to die often becomes a conscious one - turn off the artificial respiration, deactivate the pacemaker, withdraw the feeding tube, and terminate the ineffective treatment process.