Introduction

This learning module presents an overview of the influence of sociocultural characteristics on an individual’s view of death and expression of grief. Broad sociocultural characteristics of dying and grief in the United States are highlighted along with the role of experience in determining individual responses. Approaches to incorporating grieving and end of life transition into culturally sensitive care are presented.


The Influence of Culture on Attitudes toward Dying, Death and Grieving

Our beliefs, attitudes, and values about death, dying, grief, and loss are initially molded by societal dictates. Within societies, various religious, philosophical, and ethnic groups further determine and refine the range of appropriate responses, feelings, behaviors, and rituals. While there are certainly wide differences among individuals within any society or culture, particularly in their psychological processing of grief, they are often more subtle than the profound differences among cultures. Societal and cultural influences may be difficult to recognize. These contextual determinants are so fundamental to our way of seeing the world that we often overlook their profound impact on how we feel and behave about loss. We assume that everyone thinks like us.

Neimeyer and Keesee35 note that the inclusiveness of culture also makes it difficult to distinguish its contributions from those made by other important influences, such as spirituality and gender. A given culture may offer many forms of institutionalized religion, each with its own interpretation about the meaning of death in human life. At the same time, while there is individual and family uniqueness within each culture, there are generally important culturally determined characteristics. For example, they point out that even different languages give different connotations to words such as bereavement.
“The Spanish translation of grief as afliccion, ‘affliction,’ with its implication of misfortune and injury from some outside source to be suffered passively, with the English term grieving, conveying a more internal and potentially active connotation.” (p.231)35

The Key Terms in Sociocultural Context:

Attitude:

A state of mind or a feeling; disposition: an attitude of open mindedness.

Value:

A principle, standard, or quality considered worthwhile or desirable.

Belief:

Something believed or accepted as true, especially a particular tenet or a body of tenets accepted by a group of persons.

Societal:

Of or relating to the structure, organization, or functioning of society, relating to human society and its members; "social institutions," "societal evolution," "societal forces," "social legislation."

Culture:

The totality of socially transmitted behavior patterns, arts, beliefs, institutions, and all other products of human work and thought.

 

By permission. From Merriam-Webster's Collegiate Dictionary, Tenth Edition, © 2001 by Merriam-Webster, Incorporated.


Three Patterns of Societal Responses to Death

Most people understand on the broadest level that there are differences among cultural, ethnic, and religious groups in all aspects of life. These range from the food we eat and clothes we wear to the traditions we have about life’s most important transitions, such as birth, marriage, and death. These differences can become most uncomfortable at sensitive and vulnerable times like death.

Frequently the stark differences in death rituals help us better understand our definitions of what we view as normal in relation to death, dying, grief, and loss. For example, contrast the visual images apparent in the following scenarios:

  1. A funeral pyre along the sacred Ganges river in India with the body awaiting its turn for outdoor cremation and families earnestly chanting for the release of their loved one’s soul to occur at the time of the cremation.
  2. A decorated iron casket with satin ruffles inside, opened so that the embalmed body dressed in his or her finest clothes for the funeral viewing before burial in a specially landscaped cemetery in Texas.

Imagine what it would be like for the family from India to be transported to Texas to witness those rituals.

The broad social context and cultural environment is key in determining an individual’s reaction to death, dying, grief, and loss. Because death is universal, for centuries all societies have struggled with the reality of death and created a wide variety of responses to dealing with loss. There appear to be three general patterns of how societies respond to death:

  1. Death-defying--refusal to believe that death would take anything away and believe it could be overcome.
Example: early Egyptians who built pyramids for the Pharaoh which encluded their wives, money, and possessions for the world after death with the expectation that the Pharaoh could vanquish death.
  1. Death-accepting--viewing death as an inevitable and natural part of the life cycle. Behaviors and events of the dying process are integrated into everyday life.
Example: primitive, non-technological societies such as the Fiji Islanders, where rituals and interactions include casual, comfortable discussions of death.
  1. Death-denying--refusal to confront death, belief that death is antithetical to living and that it is not a natural part of human existence.
Example: United States, where there are few rituals associated with grieving. Rituals are generally replaced by contrivances for coping with grief.
From Rando, T. A. (1984). Grief, dying and death: Clinical interventions for caregivers (p. 5). Champaign, IL: Research Press. Copyright © 1984 by the author. Adapted with permission.

American Culture and Common Views of Death

Most experts agree that many, if not most, Americans have difficulty dealing with death. Lifton,26 as noted in Rando,41 suggests the following reasons:

From Rando, T. A. (1984). Grief, dying and death: Clinical interventions for caregivers (pp. 7-8). Champaign, IL: Research Press. Copyright © 1984 by the author. Adapted with permission.

Cable12 reminds us that American culture glorifies youth, beauty, and health; thus we deny the reality of death and grief. On the whole, American culture provides little support for grievers. One example is the very brief time allowed off work to deal with a family death (bereavement leave is generally 1-3 days). For the most part, we are expected to hide our feelings and emotions (by considering them private), to grieve alone and in silence, to keep up our schedule exactly as before, and to replace our loss as soon as possible.

Even the language we use is designed to make the pain less intense. We rarely speak of someone “dying." Instead, we "lose" someone, they pass away, pass on, expire, kick the bucket, are promoted to glory, and so on. These euphemisms are designed to reduce our sense of loss and emotional response of mourning.

As a culture, we discourage direct expression of grief. When someone is actively grieving, crying, expressing pain, we often say they are "not coping well." We see someone who is sad and we attempt to cheer him or her. We say things like, "You have to be brave for the children" and "You are doing so well," to mean they are not expressing pain. Experiencing grief beyond the acute first phase has come to represent a failure to adjust. It is not surprising, therefore, that we tend to avoid grief and all things associated with it.

Although this is slowly changing, one culturally embedded value is that “being strong” and not showing emotions with grief is a sign of “good coping,” strength, and emotional health. The following historical event illustrates this value.

The following description vividly communicates the power of stoicism in what has been characterized as the "Jackie Kennedy Syndrome."

The strongest communication of the grief-is-taboo in our culture came to American families through their television sets in the early sixties . . . we were struck with the horror of President Kennedy’ s assassination, the immediate anguished response of Jackie Kennedy, her pink suit splattered with blood, crawling over the back of the car, shrieking for help. What a striking and disconcerting contrast the funeral rite was, subdued, in order, according to form. Even the widow’s tears were subject to public protocol. Behind her thick black veil we saw that same face, not contorted in pain, but mask-like, frozen, still. No human emotion intruded from Jackie’s countenance into the controlled arena of grief-according-to-regulation. I was disturbed by the self-restraint in Jackie Kennedy’s bearing, by the way she had managed to bring her emotions under such severe control in so short a time . . . what was disturbing was that her image at the funeral, walking stiffly beside her dead husband’s cortege, was being put across to the American people as an example of how we ought to behave in grief. To be fair, she may have been in shock, but this was not the general interpretation of her behavior. One of the commentators called her "Queen Jackie" because of the "majesty" of her public bearing. Another praised her because she never let herself be seen with a tear or grimace on her face. To equate the apparent smothering of feelings with royal style seems to me a marked instance of inhumanity. What human queen would not feel profound pain at the loss of a loved one? And why should she not show her pain and her love openly, assuring us of her humanity and our own. I have no doubt that the first image of Jackie Kennedy, wailing her despair spontaneously at the moment of disaster, was the truer of the two images given to the world (pp. 3-4).3
From: Life is goodbye, life is hello: Grieving well through all kinds of loss by A. Bozarth Minneapolis, MN: CompCare Publications, 1986.
Permission: Hazeldon Information & Educational Services, PO Box 176, Center City, MN 55012.
Recently, dramatic changes have occurred in how our culture views the open expression of grief in the media. The events and losses of Sept 11 and the associated outpouring of grief were visible in every corner of American society. Radio, TV, internet and print media all vividly portrayed our individual and collective grief. The question now is will this generalize to other grief and loss situations?


Honoring Different Cultural Perspectives

Ideally, healthcare providers would be familiar with all the variations in cultural approaches to death so that they can help families as they carry out these important and comforting traditions. However, the dictionary definition of ritual is a ceremonial act or series of such acts.
Rituals are patterns of expected actions or words. All powerful, human experiences have accompanying rituals, although we may not think of them as that. Rituals are considered important because human beings often ritualize events in order to limit the realities that are too much to bear--to contain them in formal patterns and to make them bearable. We would risk being overwhelmed by the full impact of meaning and feeling in many life events if we had no way to harness and narrow them to fit our small and fragile capacity (pp. 9-10).3

An example of the cultural variation in precipitants of grief and rituals for families from different cultures is how they view the death of a child. For example, America parents often find that the holidays are very difficult, while the Korean parents may be painfully reminded of the death of their child when they pass by the school or see a child in a school uniform. The external expression of grief when Korean parents die is expected and is almost demanded while when a Korean child dies, crying is not encouraged even within the family setting. Body aching is a common symptom found in all cultures, however, the range was from the entire body to specific areas such as arms or legs. Bereaved parents from several cultures frequently mentioned a heavy heart. As an example of meanings of life and death in three cultures, the following sayings suggest differences. In Taiwan there is a statement that black hair should not precede white hair. In Korea the saying is that if your parents die, you bury underground, if your spouse dies, you also bury underground but when your child dies, you bury the child in your heart. In the United States the saying is that when you have lost your parents, you have lost your past, but when your child dies, you have lost your future and along with this, your hopes and dreams. At the death of a child, the opportunity for the parents to bathe the dead body and to dress the child in their own clothes is important. supply. Whereas funerals and memorial services for children are fully accepted in the United States, in some of the Asian countries the parents may be discouraged by the family members to even attend the cremation or the services.

There are significant variations among families and within cultures so while attempting to understand cultural similarities and differences, it is important to avoid overgeneralizations. Discussion of possible variations across cultures would require an entire book, but it is important to continue to learn from your patients and colleagues about their unique socio-cultural and individual views and preference so that you may increase your ability to offer culturally sensitive care. Of particular importance is how common end of life attitudes and beliefs are expressed in rituals.  As we noted here, it requires deliberate overgeneralization to speak of any culture as having a uniform set of beliefs and behaviors around death. Given that fact, it is still useful to specify some of the general characteristics that reflect a given culture. The following two examples highlight some information about African American and Mexican American cultural norms that could be useful in offering culturally sensitive care.


African American Death Rituals

  • Preparation. Report to eldest family member, spouse, or parents; open and public emoting expected but varies.
  • Home versus hospital. Varies with individual family situation; frequently care for dying elders at home until death imminent, then bring to hospital. Some believe death in house brings bad luck.
  • Care of the body. Family members usually want professionals to cleanse and prepare the body. The deceased highly respected; cremation avoided.
  • Attitudes toward organ donation. Continues to be taboo to donate organs or blood; exceptions for immediate family needs (may hasten own death if donor); some religious restrictions (Jehovah’s Witness).
  • Attitudes toward autopsy. When need explained, most families understand. Physician needs to discuss these issues with family members before patient’s death.
From: Lipson, Dibble, Minarek, Culture and Nursing Care: A Pocket Guide. pp 40-41. UCSF Nursing Press, 1996, San Francisco. Reprinted by permission from UCSF Nursing Press.


Mexican American Death Rituals

  • Preparation. Extended families obligated to attend to sick and dying and pay their respects. Pregnant women usually prohibited from caring for dying person or attending funerals.
  • Home versus hospital. Dying in hospital may not be desirable for some patients who believe their spirit may get “lost” and not be able to find its way home. In addition, hospital environment may be seen as restrictive in meeting needs of extended family.
  • Special needs. Some spiritual amulets, religious medallions, or rosary beads to be expected near patient. Prayers commonly practiced at bedside of dying patient. Roman Catholic faith provides for religious rite of anointing of the sick. If the family’s own priest unavailable, hospital chaplain or a member of healthcare team can administer this sacrament. Wailing is common and socially acceptable as sign of respect.
  • Care of the body. Death very important spiritual event. Relative or member of extended family may help with the body. Family will request some time to say their good-byes before body is taken to morgue.
  • Attitudes toward organ donation. Body extremely respected; majority of Catholics do not permit organ donation since body must be intact for burial.
  • Attitudes toward autopsy. Same principle applies to autopsy. Becomes family matter, and must be decided by whole group.
Reprinted from Lipson, Dibble, Minarek: Culture and nursing nare: a pocket guide. pp. 213. UCSF Nursing Press. San Francisco. 1996. Permission: UCSF Nursing Press.
 


Romani (Gypsy) Rituals Surrounding Death
The following are some Romani rituals adapted from Patrin Web Journal.38

  • Romani believe the dead will come back to haunt the living, especially if that living person had a conflict with the deceased.
  • When a Romani is dying, all friends and family gather at the bedside of the dying person out of compassion for the dying and to beg forgiveness.
  • Death is unnatural and senseless, dying is cursed and contaminated, the dying person should be angry.
  • One must not die in a habitual place (e.g., bed or home).
  • Tears and lamentations are publicly displayed, increasing in intensity as time goes on, and "peaking" as the coffin is placed into the ground.
  • There is total absorption in mourning, with no other activities or distractions (no washing, shaving, or combing hair).
  • Food is not prepared, only drinking coffee, brandy, and liquor is permitted.
  • Mirrors are covered, water containers emptied.
  • There is no touching of the deceased.
  • The nostrils of the deceased are plugged with beeswax or pearls to prevent evil spirits from entering the body.
  • The mourners wear white and red to symbolize purity, protection, and good luck. Red also symbolizes blood, the source of vitality and life.
  • After burial, the Romani destroy or sell everything of the deceased because they fear contamination.
  • They avoid saying the deceased's name.
  • They have feasts at various times throughout the year following the death, where relatives announce the end of their mourning period.


American Indian Death Rituals

  • Preparation. Clinician may want to suggest family meeting to discuss end-of-life issues. Most American Indian cultures embrace the present. Some tribes avoid contact with the dying. If family wants to be present 24 hours a day, this will include immediate and extended family and close friends. If family feels comfortable and welcome (see Visitors), atmosphere may be jovial, with eating, joking, playing games, and singing. Small children also included. Although outcome tacitly recognized, positive attitude maintained, and family may avoid discussing impending death. Strong Hopi cultural value is to maintain positive attitude. Sadness and mourning done in private, away from patient. Patients encouraged, not demoralized by strong negative thoughts. Some may prefer to have an open window or orient patient's body toward a cardinal direction prior to death. Once person is deceased, family may hug, touch, sing, and stay close to the deceased. Wailing, shrieking, and other outward signs of grieving may occur, a startling contrast in demeanor.
  • Home versus hospital. Varies with culture. Cultures that avoid contact with deceased may prefer hospital. Decisions may include concerns for comfort and naturalness.
  • Special needs. Be prepared to support or inquire if family wants to bring in other kinds of healers to attend to spiritual health.
  • Care of body. Care varies with culture and/or Christian beliefs. Traditional practices include turning or flexing body, sweet-grass smoke, or other purification; family (women) may want to prepare and dress the body. Family may choose to stay in room with the deceased for a time and then have individual visitation.

Reprinted from Lipson, Dibble, Minarek, Culture and Nursing Care: A Pocket Guide
San Francisco: UCSF Nursing Press, 1996) 17-18. Permission: UCSF Nursing Press.



Implications for Practice

The end of life is a vulnerable time for patients and families. The more deeply we as nurses understand each family’s unique needs, values, and rituals in relation to death and grief, the less likely we are to upset families and the more effective we can be in helping them through a very difficult experience.

It is not possible, however, to know these things about a family without asking. Very few families spontaneously offer the information, and discussions tend to occur after a problem has occurred rather than early in the process when the information can help caregivers better understand and assist the family.

In order to better understanding the socio-cultural background of your patients and families, include the following information in your nursing assessments. Questions can be woven into various discussions with the family about the patient’s terminal situation or impending death. Or, you can ask the family if they are willing to have a conversation with you about death-related issues that could help you provide better care as this process unfolds. I understand this topic can be hard to discuss, but many families have told me how important these discussions were to them.

Following are examples of dialogue to stimulate these important conversations:

  1. End-of-life care expections
    "Can you help me do a better job in caring for you and your family by sharing your expectations about my (our) care related to your mother's process of dying?"

  2. Styles and etiquette of death talk.
    "Since everyone uses different words and has different etiquette about how to talk about dying and grieving, it would help me to know what is most comfortable for you and your family."

  3. Body-handling preferences.
    "When (patient) dies, or now that (patient) has died, I will need to prepare the body to take downstairs. Do you have any preferences about this process?"

  4. Awareness of legal, logistical elements of body removal and disposal.
    "I understand this is a difficult time for you, would you be willing to talk with me about some of the logistics involved now that (patient) has died (once patient dies)?"

  5. Mourning practices immediately following a death.
    "After (patient) dies, are there some family traditions that are important to you in your grieving process?"

  6. Long-term mourning practices.
    "When you think about the next six months or a year, what kinds of things do you anticipate doing that are part of your family traditions or will help you grieving process?"

  7. Funeral or memorial preferences.
    "What traditions will your family use to commenmorate your mother's life after she dies?"

Use this information to tailor your care to support the patient and family in carrying out activities that will provide comfort to them in this very difficult time. It is also important to help the adults in the family to provide information, options and support to their children. Specifically, most experts suggest that parents allow children to decide how they wish to participate in funerals or other services.
From: Children and adolescent information from Hospice Foundation of America. Printed with permission ©1999. http://www.hospicefoundation.org


Our Own Sociocultural Perspectives: Attitudes, Beliefs and Practices of the Nurse

Nowhere in our professional practice is it more evident that our personal experiences affect the care we give than in the area of death, dying, grief and loss. Our unique sociocultural perspective, as well as our conscious and unconscious reactions to past experiences, have had a profound influence on our past as well as current reactions. It is essential, therefore, for us to invest time and attention to gain insight to ourselves and our responses to death. Our reactions and thoughts are related to our past experiences, family traditions, religious or spiritual beliefs, and heritage. Knowing ourselves better allows us to assume an attitude of curiosity and interest rather than judgment when talking with someone whose experiences and values are vastly different from ours.

It is critically important to explore some of your individual experiences and your sociocultural perspectives. The more insight you have about yourself in this area, the more skillful you can be in using your insight to address needed areas of growth with patients and families. You are urged to do some type of systematic self-assessment regarding loss and grief that could help direct you in your continued personal and professional development.


Copyright © 2002-2003 D.J. Wilkie & TNEEL Investigators