Death and Dying

Although all people die, everyone's dying process is unique. Many people think of dying as merely a physical process, but dying is an experience of the whole person and is influenced by a combination of physical, psychological, social, cultural, and spiritual factors. There are as many ways to die as there are to live, so in order to better understand how people who are dying experience the process, researchers and clinicians have developed different models or theories that attempt to account for how people cope with dying.
THEORIES/MODELS OF DYING

Elisabeth Kubler-Ross's Stage Theory of Dying

The general public is most likely to be familiar with Kubler-Ross's theory of dying. In 1969, she published a book titled On Death and Dying, which was based on interviews collected from 200 dying patients. In the book, Kubler-Ross discerned five stages that dying people experience. The five stages, which reflect different reactions to dying, are denial, anger, bargaining, depression, and acceptance.

Denial is the "No, not me!" stage where the person is in shock or denial and cannot believe that they are going to die. Denial is self-protective and gives the person time to adjust psychologically to the news that he or she is going to die. Anger is the "Why me?" stage and may involve, in addition to anger, resentment, rage, and envy at God, doctors, nurses, family members, or anyone who is not dying. Bargaining is the "Yes me, but. . ." stage and often involves bargaining with God and attempts to postpone the inevitable ("Yes, I am going to die, but if only I could live long enough to see my child graduate," etc.). Depression involves mourning for current and past losses (reactive depression) and anticipated losses (preparatory depression and grief). Finally, acceptance emerges. Acceptance is not a happy stage, but rather is characterized by an absence of feeling, a giving up or resignation, or even a sense of peace that occurs as the person realizes that death is imminent and cannot be avoided. Although not a stage of dying, hope is an important aspect of all five stages and can persist throughout all of them.

In spite of its general popularity, Kubler-Ross's theory has been criticized on several points. Two of those criticisms are that there is really no evidence that stages are present in coping with death, and there is also no clear evidence that people who are dying actually move through the five stages that Kubler-Ross identified. Many people have also taken the stages as a prescription that dying persons must experience, rather than acknowledging that dying persons react and cope in different ways and may not want to or need to go through the five stages of dying.

Regardless of these criticisms and others, Kubler-Ross taught us important lessons about the dying process. First, she shed light on the much avoided topic of dying and was the catalyst for continued discussion and research on the issue. She also brought to light the challenges of dying and taught that dying people are still living and have needs and desires that need to be understood and supported throughout their dying process.

Task-Based Models of Dying

Task-based models of dying differ from Kubler-Ross's stage theory in several ways. First, they focus less exclusively on the ways that people cope emotionally with dying and instead take a more holistic approach by considering the ways that dying persons actively cope with a variety of potential challenges across numerous dimensions of life. They also do not explicitly or implicitly imply an order or sequence, which offers a more flexible, less prescriptive perspective from which to view the challenges of both dying patients and their loved ones.

Charles A. Corr's Task-Based Model of Dying

Charles Corr has presented one popular task-based model of dying that describes four areas of task work (physical, psychological, social, and spiritual) and basic types of tasks related to coping with dying in each of those areas. Corr identified two primary types of physical task work of dying persons: satisfying bodily needs and minimizing physical symptoms of distress in a manner personally acceptable to and consistent with the dying person's values. Psychological task work includes striving to maximize psychological security, autonomy, and richness in living one's life until death. Social task work includes sustaining and enhancing both significant personal attachments and select societal interactions. Finally, spiritual task work involves the identification, development, and reaffirmation of one's meaning in life, connection to the source of spiritual energy, and ultimately, one's hope.

Corr's model is consistent with the premise presented at the beginning of this entry--that how a person experiences dying depends on a combination of physical, psychological, social, spiritual, and cultural factors.

PHYSICAL FACTORS IN DYING

The specific physical challenges associated with one's dying process depend on the characteristics of the disease from which one is dying. For example, presence and amount of pain, effects of medical treatment, medications used to treat the illness, rate of physical deterioration, and amount of loss of control all relate to the rate and ways in which one will experience the dying process.

Dying trajectory, a term coined by Barney G. Glaser and Anselm L. Strauss, describes the overall pattern of an individual's dying process with respect to shape and duration. Shape refers to the general course of the dying process (i.e., predictable/unpredictable and expected/unexpected), and duration refers to the length of time between onset of dying and the actual time of death. Four dying trajectories have been described and are presented below:

Downward slant: represented by a rapid decline toward death with little or no chronic phase of an illness

Gradual slant: represented by a long slow decline, perhaps lasting for years

Peaks and valleys: represented by alternating periods of decline/relapse and remission

Descending plateaus: represented by long, slow periods of decline followed by remission or restabilization

These general courses of physical decline influence the social and emotional response of the dying person and their loved ones. For example, although many people say their ideal death would be to die from a sudden heart attack, that type of death is shocking for the survivors and gives no time to prepare or say goodbye. On the other hand, prolonged dying processes can be financially and emotionally exhausting for everyone involved.

When a person is dying from a terminal illness and death is very near, within hours or days, the phase of active dying occurs. Physical changes that signal the phase of active dying include changes in breathing, incontinence (loss of bowel and bladder control), sweating, nausea and/or vomiting, decrease in appetite and thirst, loss of ability to swallow, change in skin color, increased periods of sleep, decreased consciousness, disorientation or confusion, restlessness or agitation, social withdrawal, and decreased ability to communicate.

PSYCHOLOGICAL/EMOTIONAL FACTORS IN DYING

Dying threatens one's emotional equilibrium, and intense, grief-related emotions can feel overwhelming. Fear, anxiety, sadness, depression, anger, hostility, helplessness, powerlessness, depression, guilt, and shame are some of the most common emotional reactions experienced by people who are dying. All of these emotions are normal, serve a purpose, and need to be allowed expression.

Denial is a common coping strategy that helps people to find internal strength and external support before confronting the implications of their diagnosis, prognosis, and impending death. Denial should not be judged as good or bad, but rather should be evaluated in terms of its helpfulness or interference in facilitating coping.

Anger and hostility are natural responses to having everything in one's life threatened and ultimately taken away. Common sources of anger are a sense of failure, poor communication, abandonment, pain, and the turn of events that will result in one's death. Anger can also be a "cover" for more vulnerable emotions such as fear, anxiety, hurt, helplessness, and disappointment.

Fear and anxiety can feel incapacitating to people who are dying. Some of the most common fears associated with the dying process include pain, abandonment/loneliness, indignity, the unknown, loss of control, separation from loved ones, meaninglessness, being a burden to others, the process of dying, and the afterlife. All of these fears can lead to both physical (e.g., tension and restlessness) and psychological (e.g., worry, apprehension) symptoms of anxiety.

Depression is a natural response to the perception of imminent loss among the dying, and while mild depression is natural and adaptive, severe depression, which is rarer among the dying, can rob them of their remaining quality of life. Depression is often difficult to distinguish from preparatory grief, the normal dying process, and reaction to poorly controlled physical symptoms.

Helplessness and powerlessness are related to perceived loss of control. Although the natural dying process results in increased dependency, dying persons need to be offered control to the extent to which it is both desirable and possible. There are always possibilities for control of at least some facets of life.

Finally, many consequences of illness and dying can produce guilt and shame. People who are dying may experience patient responsibility guilt, for the deterioration of their health, moral guilt for having done something wrong to have caused their impending death, guilt for not responding to treatment, or guilt for causing their loved ones to suffer.

SOCIAL FACTORS IN DYING

People do not live or die in a social vacuum, but rather, in the context of family, friends, and community. Dying people want to maintain relationships with special people in their lives for as long as their physical and emotional energy allows. Additionally, they often need to complete unfinished business with loved ones, which may include saying goodbye, reconciling differences, gaining closure in relationships, or expressing regrets, forgiveness, and appreciation.

Communication facilitates the accomplishment of those tasks as well as the continuation of bonds with loved ones during the dying process. Yet, one of the greatest challenges facing many dying persons and their loved ones is finding a way to talk about important issues, including the dying person's diagnosis and prognosis, as well as feelings, thoughts, and questions related to life plans, dying, and death.

Awareness Contexts and Communication

Glaser and Strauss studied family interactions that occurred when a member was diagnosed with a life-threatening illness. They discerned four levels of awareness of dying that shape the communication styles within families and that can shift any time during the course of a life-threatening illness as the course of the disease progresses and medical interventions change.

The closed awareness context is characterized by the dying person not being aware that he or she is dying, but others being privy to that knowledge. Accordingly, there is little if any communication about the person's illness or impending death.

The suspected awareness context occurs when the dying person suspects that he or she is dying, but no one confirms those suspicions. However, the dying person senses a shared secrecy and experiences the emotions and strained communications of others, and so the suspicions are confirmed indirectly. Because others are not willing or able to communicate with the dying person, he or she is left to cope with the emotional process of dying alone, in social isolation.

In the mutual pretense context, both the dying person and others know that death is imminent, but none speak directly of the issue. Everyone knows that the person is dying, but they may all act as if everything is normal and the person will recover up until the moment of death because they cannot face the situation directly. Again, the dying person is left to cope with dying alone, without the benefit of a shared experience and social support.

Finally, in an open awareness context, both the dying person and others acknowledge and discuss the impending death. Shared social support is maximized when this awareness context dominates. An open awareness context does not necessarily assure an easier acceptance of the inevitability of death, but may provide for optimal support.

Many people value an open context of awareness and communication early in the dying person's disease process because they feel it may facilitate optimal completion of relational tasks. This is important, because as a dying person's life energy wanes, a gradual process of withdrawal typically occurs. There is a lack of interest in surroundings, current events, and, finally, a withdrawal from even close loved ones. The dying person becomes more inner directed and silence becomes more meaningful. However, social withdrawal and a turning inward should not be mistaken for a cessation of the need for love and connection. For most dying persons, valued relationships are vital until the time of death.

RELIGIOUS AND SPIRITUAL FACTORS IN DYING

For most dying persons, spirituality and/or religion provide support in coping with dying. Spirituality involves a sense of connection to the universe and a higher power and the way that one makes sense out of life and death. Religion is an organized system of worship that gives structure to one's spiritual beliefs and relationship with a higher power. One or both may serve people while they cope with their dying process.

In addition to finding meaning in life, suffering, loss, and death, and feeling connected to a universal source of energy, a dying person's spirituality and religion also provide support in learning to give and receive selfless love and in finding hope. There is potential for significant growth and development at this time of a person's life, but there is also the possibility for despondency if the person who is dying feels that they have not lived a meaningful life and will not leave behind a positive legacy.

Maintaining hope is a universal challenge supported through one's spirituality and religion. Long after the hope for a cure is relinquished, people who are dying can remain hopeful. They can hope for peace, comfort, dignity, a good day, minimized loss of control, that loved ones will be able to manage without them, and living long enough to experience a cherished life event such as a family birth, marriage, or graduation.

Making the transition from living to dying is another task supported by a dying person's spirituality and/or religion. Religion provides an answer to the question of what happens after death, and having an acceptable answer can make the challenges of dying more tolerable.

The means by which dying people embrace their spirituality and/or religion and seek solace during the dying process vary across individuals, cultures, and religions. Some common forms of spiritual and religious connection include praying, attending religious services, reading spiritual or religious texts, connecting to nature, meditating, listening to spiritual music, focusing on spiritual objects (e.g., rosary, cross, altar), burning candles or incense, and being purified or anointed.

HOSPICE

The care that dying patients receive at the end of life should support them in completing the multifaceted tasks of dying. Traditional medicine is based on the Western medical model and focuses almost exclusively on curing diseases and providing medical treatments for one's physical body. It provides little or no support for the psychological, social, and spiritual dimensions of people who are dying. Hospice, on the other hand, offers holistic end-of-life care to dying persons and their families. The goal of hospice is to offer comfort, state-of-the-art pain control, symptom management, and loving care in an effort to reduce suffering so that dying persons can continue to live as fully as possible until their death.

Hospice is not institutionalized care but, rather, a community-based, comprehensive concept of care that is designed to address the physical, psychological, social, and spiritual needs of dying persons and their families. Care and support are provided during the dying process and may continue during the family's period of bereavement. Hospice care is provided 24 hours a day, 7 days a week, by an interdisciplinary team of professionals consisting of physicians, pharmacists, nurses, social workers, home health aides, physical and occupational therapists, and chaplains, as well as hospice volunteers, family, and friends.

Although most hospice care in the United States is provided in the dying person's home, the hospice philosophy and program of care can be provided for dying persons in any setting (e.g., hospital, nursing home, hospice residential facility) and in any part of the world. Although hospice care exists in some form on every continent of the world and in more than 100 countries, it is still greatly underutilized in many developing nations, as well as among minorities in the United States, who currently account for only about 5% to 8% of hospice patients. American minorities, who are more likely to have experienced neglect and inequities in health care than their White counterparts, are more likely to view hospice as medical abandonment versus compassionate care for the dying.

CULTURAL FACTORS IN DYING

In general, people from Western cultures are more death denying and death avoiding than either people from Eastern cultures or ethnic groups within the United States. However, although White Americans are generally death avoidant, they place a high value on patient autonomy, open communication between physician and patient, and the dying individual as primary decision maker during the dying process. These values are consistent with Western medicine and White culture, but there are many people in the United States and abroad for whom these values do not pertain. Ethnic and religious minorities are considered to be more death affirming, but patient autonomy and open communication may not be highly valued.

Cultural and ethnic differences in dying must be considered because dying is a sociocultural event and one's identity as a member of a culture influences the dying process and its impact on the individual and the family. Even when people have not maintained close connections to their culture's traditions, they often identify very strongly with their cultural backgrounds during a life crisis such as dying.

Native Americans

Although each tribe, clan, and nation is unique, in general, Native Americans view life and death holistically and the mind, body, heart, and spirit are interconnected with each other and all other things. This philosophy is consistent with their strong desire to meet death with dignity, since dying and death are believed to be part of a natural cycle. Additionally, most Native Americans are deeply connected to the Creator and believe that the spirit continues to live on after death. This belief influences one's response to dying and is consistent with the saying that "today is a good day to die."

When a person is dying, the extended family provides care with the support of the entire community. It has been noted that although formal hospice services are not often utilized by Native Americans, they have been using a hospice approach for hundreds of years in their communities. Many elders prefer traditional tribal medicine to that of Western medicine, and it is not uncommon for Native Americans of all ages to refuse medical procedures or treatments without having first seen the tribal medicine man/woman. They may also visit sweat lodges for purification and use sage, cedar, or grasses in healing rituals meant to return strength and balance to the heart, soul, mind, and body.

Although there are some similarities in worldview across nations or tribes, some specific beliefs, attitudes, and behaviors related to illness, dying, and death also vary. For example, while most Native American tribes believe in a continuation of life in another world following death, the Navajo do not. The Apache consider the body to be an empty shell, whereas the Lakota regard the body as sacred. The Lakota also prefer to have loved ones die at home rather than in a hospital, whereas the Navajo bring their dying to the hospital to protect the home from pollution.

Hispanic Americans

The terms Hispanic and Latino apply to diverse groups of people from more than 17 Spanish-speaking countries, including Mexico, Puerto Rico, Argentina, Cuba, and Peru, among others. Because Mexican Americans represent the largest Hispanic group living in the United States, they will be the focus of this discussion.

"Family-first" characterizes Mexican-American life. Accordingly, dying is a family affair and both nuclear and extended family members provide a strong supportive network for the dying person. A family-centered style of medical decision making is common, and the eldest male often has final authority over medical decisions. Families generally want to be told medical information about the dying person's condition first and will then decide if and by whom the news will be conveyed. Some Mexican Americans believe an open discussion of death will cause a loss of hope and disease acceleration, in which case medical information may be withheld from the family member who is dying.

Mexican Americans utilize hospice services less than any other group in the United States and rely on family to provide care for the dying person at home as long as possible. Some traditional Mexican-American families rely on curandurismo (folk healing), although this is not a universal practice. If hospitalization becomes necessary, family members maintain a bedside vigil so that the person is comforted and does not die in isolation.

The role that religion and spirituality plays in the life of Mexican Americans is deeply embedded in centuries of cultural rituals and practices. Mexican Americans adhere to fatalism and view death as inevitable, the result of fate or the will of God; and pain and suffering are seen as a test of one's faith. One's spirit must be considered in all health care situations, including the dying process. Many Mexican Americans are Catholic, and religious symbols (such as rosaries, holy water, candles with pictures of Saints, medals, and prayer cards) and practices (such as prayer, Novenas, and anointing the dying person with holy water for the last rites or sacrament of the sick) provide support throughout the dying process.

Black Americans

Like Hispanics, Black Americans comprise a diverse population, including immigrants from the Caribbean Islands and countries in Africa. In spite of such diversity, religion and church are generally integral sources of support for Blacks, who are primarily Christians, but also Muslims and members of other faiths. Regardless of the specific religion or denomination, Blacks are generally death accepting, and religion and spirituality form the foundation of efforts to cope with illness and dying.

Church attendance, prayer, spirituality, and assistance from pastors, ministers, other religious leaders, church members, and extended family and kinship networks provide support to families during the dying process. Formal caregiver services are infrequently utilized during the dying process because of a strong sense of family responsibility, a desire for kin to provide home-based care for loved ones, and a well-documented, heightened mistrust of the medical community based on years of medical care disparities across race and ethnicity. Hospice care is often not utilized for the reasons above and because of a lack of knowledge about their services, the inability to identify with providers who are predominantly White, and the perception that to enlist hospice support is to go against God's will by giving up hope. More than any other group, Blacks also want more aggressive, life-extending treatment during terminal illness.

Asian Americans

Among Asian Americans, illness and death are viewed as fate, and medical intervention may be resisted for fear that it may interfere with one's spirit. However, use of acupuncture, acupressure, coin-rubbing (to draw out the illness from the body), and herbal remedies are common practices. Many Asian Americans believe in reincarnation; therefore, death is viewed as a transition into some other life, rather than the end of life, and consequently is not feared.

Many families of Korean, Chinese, and Japanese descent prefer that terminally ill and dying family members receive care in the hospital, and traditional Chinese-American and Japanese-American families maintain bedside vigils and minister to the dying person's needs, while medical personnel provide technical medical care. In Korean and Japanese families, the family, rather than the dying person, is told the news of the terminal nature of the illness, and the eldest son makes medical decisions regarding the dying person's treatment and care. Chinese Americans are more likely to prefer that the ill or dying person be given the diagnosis first, and then that person, rather than the physician, tells others. Vietnamese-American families prefer their loved ones to die at home, and the person who should be told about the terminal medical condition depends on who is believed to be the strongest. In traditional Chinese family structure, if a parent is sick or dying, the sons will provide care at the bedside, rather than daughters.

Religion, Culture, and Dying

Although one's culture influences one's response to dying and death, religion is the mainstay of many cultural groups. Thus, any particular response to dying may vary within a culture, depending on a particular person's religious beliefs and customs. India provides a good example to illustrate this point, because in India people are Hindus, Buddhists, Muslims, and Christians, and each religion and every region has its own traditions and beliefs related to death and dying. Although a comprehensive account of those traditions is beyond the scope of this entry, several examples of the characteristics of the non-Christian religions will be highlighted.

Even though the Hindu culture is death affirming, it is customary to purify the home and those who have contact with the dead body before engaging in any other activities. In South India, among Hindus, when death is anticipated, the family members move the person who is dying to the patio or to the front yard so that the soul does not become entrapped in the house when death occurs. During this period, loved ones usually stay with the dying person until their last breath. Holy water from the river Ganga is placed in the person's mouth to purify the body and the soul as the person takes the last breath.

The concept of "good death" is very prevalent in Hindu cultures. It is believed that if one lives life to the fullest and does good while alive, the person usually has a good death. Karma, or a person's deeds in life, determines what the end is going to be, and this belief becomes a guiding principle to live life accordingly. Hindus also believe in reincarnation or rebirth depending on what a person did in his or her life. If a person has lived a righteous life, the person is reborn as a higher being. Conversely, if the person has not lived a good life, the person is reborn as a menial creature. For Buddhists and for Hindus, life on earth becomes a transitional phase between reincarnations. Death, in fact, challenges people to live their lives better.

Muslims consider illness, especially of a terminal nature, as atonement for one's sins or wrong doings. Although death is believed to be a part of the journey to meet the creator, Muslims emphasize the sacredness of life and need to prolong life. In Islam, when a person is dying, the head of the person is turned towards Mecca (i.e., east-south-east). The immediate family usually stays by the bedside of the person who is dying and makes sure that the person is comfortable.

SUMMARY

Dying is a natural life passage, as much a part of our life cycle as being born, entering puberty, or becoming an adult. If a dying person's whole self is supported within a cultural context, there is significant opportunity for continued growth and development during the last stage of life.