Introduction
People are unique while they are alive, and that uniqueness extends to death and dying. The manner in which people encounter and cope with a terminal disease and the dying process holds endless variations.
The Hippocratic philosophy of medicine declares that a physician must act in the best interests of the patient seeking care. The goal of medical care is to overcome sickness and relieve suffering, thus preserving life. Sometimes, however, it is necessary to add to a patient’s suffering to achieve ultimate relief, as with cancer treatments such as chemotherapy and radiation, and surgery that may result in periods of debilitation. These treatments are generally acceptable if there is a reasonable promise that they may ultimately reduce or eradicate a disease or condition. When only a small possibility of survival exists, however, patients may decide to end or forgo a particular course of treatment. That decision is generally made by the patient and the family in conjunction with the medical team. Religious and philosophical factors as well as age, family values, and family history may enter into the decision. Generational differences may also affect how the patient and the family approach or ultimately accept a terminal diagnosis.
Advance Directives
Death is a natural event, but end-of-life experiences are often shaped by medical, demographic, and cultural trends. Medical professionals have a duty to keep terminally injured or ill patients alive as long as possible by powerful medicines, machines, and aggressive medical care unless the patient desires otherwise. Often, however, patients have not expressed their desires in advance of becoming terminally ill or injured. If patients can no longer speak for themselves, other people must make decisions for them, frequently contrary to what the patients themselves would have wanted. This dilemma can be solved if a person writes a living will or advance directive, a document in which a person’s desires in the case of a terminal illness or injury are recorded in advance of entering such a state.
Advance directives, including durable powers of attorney (DPOA) for health care and do-not-resuscitate orders (DNR), allow legally competent individuals to express their wishes for future health decisions in the event that they are unable to participate directly and actively in medical decisions regarding their care. Patients can also designate a person or surrogate to act as decision maker. Advance directives are valuable because most family members find it difficult, if not overwhelming, to make complex choices about end-of-life care for a loved one. If patients have communicated their wishes about end-of-life care, however, their wishes can be respected. Advance directives are recognized in all fifty states in the United States and are legally binding if executed in accordance with state guidelines.
Advance directives are applicable only in situations in which patients are unable to participate in decisions regarding their health care. Decisions by legally competent patients always supersede written directives. In addition, people may revise or revoke advance directives as long as they remain able to participate in making medical decisions.
Legally competent
patients have certain rights, including the right to refuse treatment, the right to discontinue unwanted treatment that has already begun, the right to refuse nutrition and hydration even if that hastens death, and the right to change physicians. If the patient is incompetent, the proxy decision maker can inform the medical team about the patient’s wishes as enunciated in the advance directive.
Dying and the Hospice Movement
Most people do not die in a way of their choosing. During the fifteenth century, the Roman Catholic Church introduced a body of literature called ars moriendi, or the “art of dying,” which centered on the concept that people must be aware of and prepare for death during their entire life (this view held that a person’s entire lifetime is a preparation for death). People believed that the only possible attitude toward death was to let it happen once symptoms appeared. The only choice in death was to die in the best way possible, having made peace with God. Over centuries, that concept has evolved into the idea of a “good death,” and programs such as hospices have developed to manage the process of dying and make it as tranquil as possible. Evidence indicates that if they retain their awareness, the dying wish to be treated as human beings until the moment of their death. Preserving the dignity of the dying often means including them in discussions about the decision-making process surrounding their deaths and including them as family members. For a “good death,” or death with dignity, the dying should be treated with compassion, tenderness, dignity, and honesty.
Medical professionals are taught that listening is an important way of gathering information and assessing a patient’s physical and psychological condition. Moreover, listening also is a means of providing comfort. Even when the dying can no longer speak, it is widely believed that they can hear, so continuing to speak to the dying may provide physical or spiritual comfort.
The hospice movement, which began in the late 1980s, provides
palliative care (comforting rather than curing) for the dying. The dying are given humane and compassionate care with the goal of keeping the patient pain-free and alert as long as possible. The focus of palliative care is not on death but on compassionate, specialized care for the patient’s remaining life. Palliative care may be delivered in a hospital setting while treatments are being given or in a hospice or home setting. Both hospice and palliative care are individualized to suit the particular patient.
The Aging Process and Death
The aging process is explained by two main theories: the wear-and-tear theory, which attributes aging to the progressive damage to cells and organs through the process of carrying out their normal everyday functions, and the genetic theory, which holds that aging involves the existence of a genetically predetermined life span that controls the longevity of individual cells, organs, and entire organisms. Environmental factors such as pollutants and toxins in the atmosphere are believed to slowly damage genetic information transmitted by cells, resulting in errors in a cell’s function and leading to its death. Such mutations and cell death are also thought to be caused by free radicals in the atmosphere (unstable compounds that can damage cells) and impeded linkages in people’s deoxyribonucleic acid (DNA). These changes in the organism manifest themselves as aging.
As people age, their bodies change and decrease in complexity, becoming less efficient at carrying out basic processes. For example, as arteries narrow, they begin to lose their ability to carry oxygen and nutrients, and they are less resilient after injury. The ultimate cause of death is generally the result of a progression that involves the entire body: the aging process.
Infection (often in the form of pneumonia) is exceeded only by atherosclerosis (commonly referred to as “hardening of the arteries”) as the leading cause of death of people eighty-five years of age or older. Alzheimer’s disease (a form of dementia) is the progressive degeneration and loss of large numbers of nerve cells in those portions of the brain associated with memory, learning, and judgment. Striking more than 12 percent of the United States population over the age of sixty-five, Alzheimer’s disease is projected to reach staggering proportions and strain resources. Other leading causes of death are cancer and stroke.
Dying
An innate life force compels the body to continue living, despite the ravages of disease. Ultimately, however, this life force diminishes until it stops completely and irreversibly. As the body begins the dying process, sleeping increases, food and beverage intake gradually decrease, breathing becomes labored and shallow (dyspnea), and periods of apnea (the absence of breathing) become longer and more frequent. Cyanosis, or a bluish discoloration of the skin due to the lack of oxygen and an increase of carbon monoxide, may indicate an impaired circulatory system. Convulsions may also occur as blood pressure falls, oxygen supply to the brain diminishes, and brain cells malfunction. Decaying flesh may also emit an odor, and fever and sweating may occur. The patient may become restless as an increased heart rate attempts to compensate for the lack of oxygen. The exhausted heart ultimately slows and then stops completely. Hearing and vision decrease, and brain activity slows. The so-called death rattle and foaming at the mouth are also indications of the shutting down of the body.
When death has occurred, the person will no longer respond to word or touch. The eyes will be fixed and the eyelids slightly open, the jaw will be relaxed and slightly open, and the skin will assume a dull and lifeless appearance. Medical or clinical death, when the heartbeat and respiration cease, is the oldest means of determining death. Brain death is the newest criterion for determining that death has occurred. Tiny electrodes are placed on the patient’s scalp to detect electrical activity in the brain through means of an electroencephalogram (EEG). A flat EEG indicates that brain cells are dead. When deprived of oxygen, brain cells die within four to six minutes. A person can live indefinitely in a persistent vegetative state if the brain stem is still functioning, although there is much debate about whether that condition constitutes life.
Despite many signs, it sometimes remains difficult for physicians to declare unequivocally that death has occurred. For that reason, in 1968, the Ad Hoc Committee of the Harvard Medical School published what has become known as the “Harvard Guidelines.” It is recommended that a patient be declared dead only after having been monitored twice during a twenty-four-hour period in which no changes appear: unresponsiveness of vital signs, no movement or spontaneous breathing, no motor reflexes (pupils unresponsive to light), and a flat EEG.
Kübler-Ross Stages of Death
Elisabeth Kübler-Ross, a Swiss psychiatrist, revolutionized care of the terminally ill. Credited with helping to end the taboo in Western culture regarding open discussions and studies of death, she helped change the care of many terminally ill patients by making death less psychologically painful. She encouraged health care professionals to speak openly to dying patients about their experiences in facing death, thereby learning from them. This was a revolutionary step because dying was equated with failure by the medical profession.
In her best seller On Death and Dying (1969), Kübler-Ross identified five stages of death based on interviews with patients and health care professionals. The first stage, denial and isolation, occurs when patients are first confronted with a terminal diagnosis and declare that it just cannot be true. Despite overwhelming medical evidence to the contrary, patients will rationalize, thinking that X rays or pathology reports were mixed up and that they can get a more positive diagnosis elsewhere. Patients seek examination and reexamination. Denial acts as a buffer, allowing patients time to collect themselves and digest the shocking news. Denial as a temporary defense is gradually replaced by partial acceptance.
The second stage involves anger, when patients question why they have a terminal condition and feel resentment, envy, and rage. They begin to face reality and direct hostility toward family, friends, and doctors.
The third stage involves bargaining; patients seek to extend their lives in exchange for doing good deeds. Bargaining is an attempt to postpone death, according to Kübler-Ross, and must include a prize “for good behavior.” Most bargains are made with higher powers (God, in the case of Christians and Jews) and generally remain secret or mentioned only to a chaplain or other religious leader.
The fourth stage involves depression, when people become despondent because they realize that death is imminent and bargaining is unrealistic. Anger and rage are soon replaced by a sense of great loss. Depression involves past losses as well as impending losses (anticipatory grief).
The fifth stage is acceptance, reached when people admit that everything possible has been done. Patients assume a “so-be-it” attitude, neither depressed nor angry. They typically are able to express previous feelings, such as envy for the living and healthy, and anger at those who do not have to face their destiny so soon. Having already mourned meaningful people and places, patients are able to contemplate the coming end of life with quiet and often detached expectation. Acceptance is almost void of feelings, and as peace comes to patients, their interests diminish. Nonverbal communication between family members, patients, and staff assumes a greater significance. Reassurance that the dying person is not alone is important.
Developed initially as a model for helping to understand how dying patients cope with death, the Kübler-Ross model and its five phases have been adopted by many as the stages that survivors experience during the grieving process. The concept also provides insight and guidance for adjusting to personal trauma and change, and for helping others cope with emotional upheaval, whatever the cause.
However, controversy surrounds the categorization of death and dying proposed by Kübler-Ross. Sherwin B. Nuland, in How We Die: Reflections on Life’s Final Chapter (1994), states that experienced clinicians know that many patients do not progress overtly beyond the denial stage and that many patients actually continue denying the inevitable despite repeated attempts by physicians to clarify the issue. Other critics (such as Edward Schneidman) fault Kübler-Ross’s interviewing techniques, claiming that they rely on intuition, and argue that her conclusions are highly subjective. Others claim that one process does not apply universally to everyone and that patients do not progress smoothly from one stage to the next.
Thanatology
Thanatology
is the science that studies the events surrounding death and the social, legal, and psychological aspects of death. Health professionals including psychiatrists, forensic pathologists, advanced practice nurses, veterinarians, sociologists, and psychologists are the main members of the thanatology community. Thanatologists may study the cause of deaths, the legal implications of death such as autopsy requirements, and the social aspects surrounding death. Grief, burial customs, and social attitudes about death are frequent subjects. Thanatology also overlaps with forensics when it focuses on the changes that occur in the body in the period near death and afterward.
Some social issues explored by thanatologists, such as euthanasia and abortion, are subject to ethical and legal controversy. Laws set burial, cremation, and embalming requirements and determine rights over the bodies of the deceased. Clinical autopsies are generally required in cases of unexplained or violent death, when suicide or drug overdose is suspected, or when requested by the deceased’s family when a medical error is suspected or to confirm certain diseases.
Bibliography
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