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Journal of Pediatric Hematology/Oncology:
doi: 10.1097/MPH.0b013e318230dd98
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Impact of Culture on the Expression of Pain and Suffering

Wein, Simon MD

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Author Information

Palliative Care Service, Davidoff Cancer Center, Beilinson Medical Center, Rabin Center, Petach Tikva, Israel

The author declares no conflict of interest.

Reprints: Simon Wein, MD, Palliative Care Service, Davidoff Cancer Center, Beilinson Medical Center, Rabin Center, Petach Tikva, Israel (e-mail: Simonwe@clalit.org.il).

Received August 2, 2011

Accepted August 2, 2011

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Abstract

A primary human challenge is how to alleviate suffering and loss. One way is through culture. The core characteristics of culture are symbols, sharing and groups. These three factors enable society to help the individual cope with loss. In the modern age traditional culture is disintegrating and is being replaced. Often it is outstanding individuals who provide the impetus and tools with which to change the culture and to adapt to new challenges. One lesson to be drawn from the discussion is the idea of using our culture more pro-actively to routinely contemplate loss, ageing and death.

While preparing this paper, I was reminded of a recent article in the International Herald Tribune about the etiquette of whether an individual when speaking or writing should do so in the singular “I” or the plural “we.” I could have started the paper with, “Our task today is…” However, being pernickety about manners and matters of writing, I took to heart the advice of that Tribune reporter who declared: One never uses the plural “we” in writing or speaking unless one is a royal head of state, a pregnant woman, or a schizophrenic.1 Thus, I shall stick to I.

Culture is complex. Not only is there no clear definition but there are also many versions. The word culture is best described by a set of common characteristics that have not yet coalesced sufficiently to achieve the high degree of integrity required to be labeled a definition. This is common in both the humanities and the sciences.

I have distilled from the literature 3 core characteristics of culture: symbols, sharing, and groups. Symbols represent values, attitudes, beliefs, or indeed a river, factories, or an opera house. Culture, through these accumulated symbols, is imprinted and impregnated into the individual’s mind as a mental blueprint, which shapes thinking and behavior. Culture is shared by transmitting these symbols across generations. As a result of the symbols and the sharing, groups are formed, and individuals are brought into line. Thus, culture serves to distinguish one group from another, for better or for worse.

Culture, however, is a 2-way street. Individuals through their unique creativity can break free from the confines of their culture-programmed minds and change the culture. Just think of Bob Dylan, Woody Allen, and Rembrandt, or of Abraham, Buddha, Jesus, and Muhammad. In fact, each one of us ordinary folks has a personal life story, which is separate from the ambient culture but is of course deeply in debt and intertwined. Tension between the individual and the culture—be it the ethics of abortion or of end-of-life resuscitation—is universal and is a source of much disquiet and, paradoxically, of suffering.

For the purpose of this talk, I am going to subsume pain into suffering. There is a well-known pie diagram that places suffering at the center of the pie with different segments angling out—the segments include social, physical, spiritual, and psychological factors. Each segment of the pie interacts with each other to flesh out the whole-person experience of suffering. A good pain nurse or doctor, when presented with a complaint of pain, works backward to see how the pieces of the pie—physical pain, existential anxiety, financial problems, marital disquiet—fit back into the whole in order to give a complete picture of the individual and their pain.

Suffering can be understood and characterized as a sense of loss. Allan Kellehear, a sociologist who specializes in palliative care, noted that “loss is a changed relationship with a loved person or object. People do not give up on their losses but continue to be open to re-negotiating a new way to relate to these losses.”2 Thus, loss (and suffering) is not a full stop. The psychological work we do with our losses should be a life-long process that indirectly prepares us for our biggest loss.

With these few introductory remarks I shall present the hypothesis of this paper and then explore the evidence.

The hypothesis is that culture, with its symbols, sharing, and groups, provides meaning to a person and helps them to make sense of, resolve, or cope with their suffering and loss. Unfortunately, culture does not always succeed, and it may be inadequate for dealing with the suffering. For example, magical thinking may exacerbate pain by insisting on ineffective herbs and spices; or minority cultures may clash with the majority culture; or individuals may not know how to use their group’s set of shared symbols and values. And what of the modern West, which seems to have discarded its traditional culture in the course of the previous century. Rollo May, the American existential psychologist, observed that “the birth and proliferation of psychotherapy in our contemporary age was called forth by the disintegration of our myths. Myths are our way of finding meaning and significance.”3 For myths, read culture. For disintegration, read the search for meaning, from scratch.

Let me tell you a couple of stories by way of illustration.

Last year, I cared for a 24-year-old Jewish girl who had recently married. She presented with relapsed cervical cancer. She died 6 months later, never having left the hospital. She had terrible pain and was on intravenous ketamine, morphine, and midazolam. Repeatedly the family asked why such a beautiful, recently married girl should suffer so much? The young couple had become religiously observant after her initial diagnosis. When the disease relapsed, they said: But we made this contract with God who did not keep His side of the deal. However, the fear of death convinced them to forgive God and keep believing. About half-way through the illness, her mother said: Suffering cleanses the soul of sin and therefore it will be easier for her to get into paradise after death. Thus, culture.

Earlier this year, we treated a 20-year-old girl from Gaza who came from a religious Islamic family of 6 children. She was an identical twin. She had a rare, aggressive neuroendocrine tumor that filled her liver and eventually killed her. Her mother would accompany her to Israel for each treatment. The girl had severe pain, required opiates, and was extremely cachectic. The day before she died, we spoke with her mother. Her mother had already accepted and reconciled herself to her daughter’s death and, guided by her beliefs, was calm. The calm was bolstered by the knowledge, as she described it, that her daughter’s suffering on earth would most certainly guarantee an easy passage into paradise in the next world and that one day she too would join her daughter in paradise. Thus, culture.

These are 2 examples from different, although connected, cultures, where beliefs, using religious symbols, can palliate suffering. Maybe it is true that when an innocent person suffers in this world the passage to the next world is easier. Maybe it is a contrived cultural story to offer an explanation for the injustice of a young person’s suffering. The point I guess is that it depends on which cultural symbols work for you—if any.

Years ago, I had a patient who simply shrugged and sighed: Oh well, why not me? An existential approach based on a secular tradition that “this is life, this is all we know, live the best you can today, for you know not what tomorrow may bring.” Similarly and conversely, I once met a Rabbi whose young daughter was dying (having been knocked over by a drunken driver). He said: “This is the will of God; His ways are inscrutable to man; I believe in God, thus I accept.”

What is this need for an explanation, for a rationalization of suffering, loss, and dying? I think the need is innate. I think it is an inborn need of mankind to make sense of the world and build, like the Tower of Babel, theories to understand and thereby control, even if only cognitively or conceptually, what is happening. Life is control; loss of control is death. The need to explain, to categorize, to understand the inexplicable is surely hardwired as it enables us to survive. If I am presented with a life-threatening problem and I can figure out what is happening, rather than relying on reflex brain-stem instincts, I will have a greater chance of finding a solution and surviving. However, this hardware has to be substantially upgraded and modified by the software of culture. Culture provides the context and content of the innate drive and provides a practical application for survival and, I hypothesize, to comfort at the same time.

There are many cultural myths that categorize and attempt to neutralize suffering. A common one is to declare that disease is the result of immoral or sinful behavior. For example, in the Old Testament, Miriam was punished with a serious skin ailment, leprosy, for speaking against her brother Moses. Or, more recently, people speak of HIV-AIDS as a punishment for the immoral behavior of homosexuality. Nevertheless, even Job, the prototypical when-bad-things-happen-to-good-people hero, accused God of injustice in the face of his seemingly unjust suffering. However, Job eventually acknowledged: “I accused you God, but I did not understand the wonders of the world that are beyond me. Therefore, do I recant my accusations.” (Job 42:3 to 6). Even the process of trying to understand one’s fate can palliate.

As humans, we are stuck between animals and angels and therefore suffer the ignominy of being conscious of death, of being fearful, and of being able to anticipate the final scene in the Shakespearean tragedy and yet be doomed to die. Consequently, we desperately seek to understand to alleviate the anxiety of living as God’s castaways on a tiny blue-green oasis in the unimaginable void and vastness of space, the universe, and everything (with apologies to Douglas Adams).4

The loneliness of isolation is what Ingmar Bergman, the iconic Swedish film-maker, emphasized when he spoke about his fear of death. He describes his film, The Seventh Seal, as a catharsis for his obsessive anxiety about death. One insight he shared was that loneliness, deep loneliness, is no more nor less than the awareness of death. Yet, he also observed: “I like to live here on this island. You can't imagine the loneliness and isolation in this country. In that way, I’m very Swedish—I don't dislike to be alone.”5 Being alone by choice is not the same as loneliness of course. Bergman is a fine example of the power of the individual’s creativity, sieved as it were through his Swedish culture and family dynamics, to change the world of movie making. Thereby, this individual created a new culture to palliate old suffering.

What does modern western culture offer to the suffering and the dying? How difficult and different is it for a young person without a traditional culture to cope with death? Irving Yalom, the author of the classic textbook Existential Psychotherapy, suggests that an elderly person who can look back at a life of personal success and achievement tends to die more satisfied. Culture surely plays a role; however, the emphasis on the individual’s existential catharsis is typically modern western.6 Viktor Frankel, the Viennese psychiatrist who was also a concentration camp survivor, emphasized the meaning-seeking behavior of man. Frankel7 stated that the thing no one can take away from you is your freedom to choose how to respond to any given circumstance. This is another way of providing control and is a mental process that is not necessarily dependent on age and culture. I am reminded of one of Nietzsche’s all too pithy sayings: He who has a “why” to live, can bear almost any “how.”8 The why is often cultivated by culture, but its fruits are reaped by the individual.

Kellehear in his book “A Social History of Dying” puts his views on death and society in contrast to the psychoanalytic 20th century. For example, he proposes that “the anticipation (of death) for dying people in the Stone Age may have been the single biggest impetus for culture building: for the development of laws, technologies and sciences”; and about preparing skills for the challenges of the “otherworld journey.”9 That is, anticipation of death was used creatively as the driving force for culture, not crippling fear and neurosis in anticipation of the ego’s death, which the psychoanalytic century emphasized.

This rings a bell. Should we not spend more of our lives using our culture to anticipate our death, in contemplation? To use literature, theater, music, religion, science, sport, spirituality as a stimulus, an irritant, to think about failure, about loss, love, and hate, about problematic human relationships, about the journey and not just the destination, about the aging process and loss of youthful powers, about retirement and loss of structure and function, and about our nonfuture. This should be a part and parcel of our day-to-day culture. This might teach us how to cope with suffering and dying, the feral fruits of fertility. That is, in anticipation of suffering, we should already be preparing our relationship with death and loss.

So what is the culture of modern western civilization? What support or understanding does it provide in the face of suffering? Is the development of the comparatively new discipline of psycho-oncology necessary to fill the gap left by a receding religious or other cultural heritage? The girl from Gaza died shortly after returning. She was buried in a process filled with ritual, meaning, and rules of behavior. She passed on to the next life without the need for psychotherapy, as the social network, religious leaders, and the transmitted culture provided the necessary support.

The West is creating a new culture to deal with suffering and loss. It is made of websites, palliative and psycho-oncology research, social workers, psychologists, medication, movies, books, self-help groups, and internet-based social networks. It is a complex process of neo-meaning-making. I think the new culture will eventually do its job—as it must. However, at present it is evolving. We are waiting for the new symbols to be caramelized, canonized, and transmitted—like the meme in Dawkins’ selfish gene.10

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REFERENCES

1. Zimmer B Op-ed, International Herald Tribune, A Presumptuous Pronoun, 4 October 2010

2. Kellehear A. On dying and human suffering. Palliative Medicine. 2009;23:388–397

3. May R The Cry for Myth. New York: Norton; 1991:15

4. Adams D Life, the Universe and Everything, 1982

5. Bergman I The Seventh Seal (film script), 1957

6. Yalom I Existential Psychotherapy, 1980

7. Frankel V Man's Search for Meaning, 1946:104

8. Friedrich N The Portable Nietzsche. 1977 Penguin

9. Kellehear A A Social History of Dying. 2007 New York Cambridge University Press

10. Dawkins R The Selfish Gene, 1976:206

Cited By:

This article has been cited 1 time(s).

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Cultural Perspectives in Cancer Care: Impact of Islamic Traditions and Practices in Middle Eastern Countries
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Journal of Pediatric Hematology/Oncology, 33(): S81-S86.
10.1097/MPH.0b013e318230dab6
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Keywords:

culture; suffering; pain; death; palliation

© 2011 Lippincott Williams & Wilkins, Inc.

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