From Concepts to Reality
Anthropological Perspectives on Palliative Care
Palliative care seeks to transform biomedicine with a system of care that emphasizes pain control, symptom management, nutrition, complementary care, and emotional and psychological support. Palliative care is also patient- and community-centered in that it meets the needs of people, not just the needs of medical systems. The literature on palliative care to date has been primarily based on the European or American experience. Anthropology holds up a mirror to other cultures in which we see ourselves; in other words, we can see our own culture more clearly by understanding the differences between cultures. When we try to place palliative care in a larger context, or against a cross-cultural backdrop, we begin to understand palliative care in relation to what it is trying to replace: narrow, purely biomedical, curative medicine.
Cultural anthropology helps us see dying as a social process. It provides us with a number of important tools with which to understand this universal yet culture-specific process. Anthropology asks us to look at the way in which the process of dying is organized in time and space as well as at the web of social relations in which the process takes place.
Anthropology asks us to look at the way in which the process of dying is organized in time and space as well as at the web of social relations in which the process takes place.
Biomedicine tries, with some accuracy, to predict the dying process. For the culture of biomedicine, the HIV test begins a long process, and for individuals and institutions associated with biomedicine, the dying process generally starts with a diagnosis and prognosis.
Other cultures have profoundly different mechanisms by which people understand this phenomenon. The beginning of the dying process is marked in culturally diverse and unique methods, such as dreams. Thus, dreams can be thought of as a piece of cultural machinery with which to determine the beginning of a process, analogous to the way in which the HIV test initiates recognition. In Ethiopia, for example, it is believed that when a person dreams of a dead relative coming to take him away, the person comes to know about his impending death. In Sepik society—an isolated, materially less developed people in Papua New Guinea—a dream of eating a meal with a dead relative is a clear sign of impending death. I am not suggesting that dreams are a superior way of determining the beginning of the dying period. I only want to say that different cultures use different methods.
Like the beginning of the dying process, palliation is unique in different cultures. In Sepik society, there is no palliation—indeed, there is no care. Ill people lie on the ground and rub ashes on their bodies while a shaman consorts with ancestors to resolve conflicts between kinsmen, which are thought to be the cause of all maladies. Curative ceremonies and mortuary practices focus on making the social body whole. In Sepik society, the diseased body or the missing body of the dead is dealt with as an assault on the social body. Society must be healed when a person is sick or dies.
The Sepik are at one end of a continuum made up of what Allan Young, the noted medical anthropologist at McGill, calls “internalizing and externalizing” systems. The Sepik externalize: For the Sepik, the body is a black box. Ayurvedic medicine of India and biomedicine internalize. (Ayurvedic medicine is the system of healing derived from the ancient Hindu religious text, the Vedas). Those systems of thought elaborate a complex system to describe bodily functions and malfunctions. They see the body as a machine. Other cultures fall within the two poles of the continuum.
Even Western cultures have a variety of ways in which the dying process is recognized and dealt with, but biomedicine is dominant and tries to impose its vision. In many instances, however, a parallel process within families and communities interprets events around the sick person in a very different way. Complex “negotiations” between biomedicine and culture frequently take place.
For example, in the hospital setting, the Navajo nation comes into conflict with the U.S. biomedical culture regarding discharge planning. Federal regulations require that the discharge planning process disclose diagnosis and prognosis to the patient—a good thing, most people would say. Navajo culture, however, does not believe it wise to tell a person that he or she is dying. In the Navajo nation and in many other cultures, death is an accident or caused by some outside agent, like witchcraft. The cultural needs of the Navajo put them in conflict with Federal regulations, according to Carresse and Rhodes (1995).
The shift of death from home to hospital, which began in the 18th century, marked a major cultural revolution in Europe.
Source: Lubitz JD, Riley GF. Trends in Medicare payments in the last year of life. N Eng J Med. 1993;328:1092-96.
Thinking of death as an accident may sound strange, but let’s reflect on the American system for a moment. It may sound strange, but one could argue that death is a contingency in mainstream Western culture and not really an accepted part of life. In biomedicine, death has evolved as a heroic struggle between doctors and disease that takes place in a hospital. Sometimes, the doctors and nurses lose.
Our system of care illustrates the assumption of death as a contingency by the way in which it funds care. Our current system of medical care expends 10 to 12 percent on end-of-life care, and end-of-life care also represents almost a third of Medicare expenditures (Lubitz and Riley, 1993). These are not efforts to preserve the quality of life; rather, they represent an expensive, painful struggle in which the body becomes an object and little regard is given to the patient’s comfort and care.
The anthropological perspective tries to understand the diverse ways in which cultures organize the time and space around dying and how social relations define events. Hindus believe in the cycle of death and rebirth, in the reincarnation of a soul in a chain of being. Also central to Hindu thought is the concept of asharama—the stages of life. In a good life, a person passes through the student, householder, hermit and, finally, the renouncer stages of life. Over the course of life, a person learns to accept death in Hinduism and is expected to renounce life in the final stage. An ideal death in Hinduism is indeed that of the yogi who has control over the body and can let go of life at the time of his choice. The notion of dying suddenly in one’s sleep, something many in the West idealize, is thought by some devout Hindus to be a misfortune because it deprives one of control.
I do not want to generalize about Islam because local customs in Africa, the Middle East, and Indonesia are very different. However, Muslim people share a core set of beliefs around death and dying. Generally, the Koran is the primary source of wisdom and instruction on matters. Distinct from the Judeo-Christian tradition is the belief in the “life of the grave,” a time of painful struggle after death and before final resting. Attitudes toward death are much like other approaches to life in Islam: Piety and stoicism—acceptance of God’s will—are paramount. Preparation for death has strict religious context, or Sunnah. Sunnah means custom and refers specifically to customs derived from the sayings or actions of the Prophet Mohammed. The Hadith, the sayings of the prophet Mohammed (after the Koran, the other central text for Muslims), prescribes performance of ablutions and recitations of the profession of faith before death. A Muslim hopes to lie down facing Mecca and to be surrounded by family and community when he is dying.
Muslim beliefs about dying reflect general religious ideas about death and cultural practices. Religious texts, their interpretations, and associated beliefs are most often prescriptive in nature, and they indicate what people think they should do or what they would like to do. Actual cultural practices are much more complex and mutable.
Male–female dualism is central to Islamic culture, and it is played out in events surrounding death. The roles of women as related to dying are contradictory and changing. For example, until recently, professional women mourners in Pakistan helped women in a family through dramatic wailing, in great contrast to the stoic demeanor expected of a man. Men are expected to accept the will of God in a dispassionate manner. Women are considered closer to nature, infused with passion and emotion. This concept is currently in flux, however, as Islamic societies are changing. Men and women are increasingly held to similar standards of stoicism and piety around death.
From a European historical perspective, we can also understand the unique status of our present-day culture. The French historian Philippe Aires, in his history of dying in Europe, describes the transition from ars moriendi (the art of dying) to the contemporary battle in the hospital (the science of dying). In medieval times, European culture had a ritualistic and accepting attitude toward death. The transition to modern European culture was marked by the expropriation of the body by a medical system with its own priorities and prerogatives.
Starting in the 18th century, the shift of death from home to hospital marked a major cultural revolution in Europe. We are now in the midst of another cultural revolution in the West, and palliative care is leading the way. We are seeing a revolt against objectification and medicalization, and palliative care is the next step in this dialectical development. The struggle is for work in health care to become more patient centered, not medicine centered. With this change, quality of life becomes central, replacing cure as a mode of control.
In her book Death Without Weeping, the anthropologist Nancy Scheper-Hughes provides a deeply disturbing account of the lives and deaths of children in Brazilian shantytowns, or favelas. In the book’s introduction, the author struggles for a purpose in documenting the wrenching harshness and brevity of lives in the favelas.
[S]hort of a theological mediation on the passions of the soul, what meaning have these empty spaces, these missing and disappeared bodies? I hope to show the difference they make when the everyday, lived experiences of a large number of threatened people [are] introduced into current debate on the state, the politics of fear, and the problem of the disappeared.
Palliation, as part of the fight against HIV/AIDS, is giving meaning to empty spaces, to the disappearance of bodies. Care gives a voice to those living with AIDS in a world that would rather not listen. Relief of pain and provision of comfort are noble endeavors, but palliative care is caught up in a larger, political struggle. The lived experiences of those for whom we seek to provide comfort are forced into the consciousness of people all over the world. The pain of the more than 60 million HIV-infected bodies will not disappear so easily. Palliative care, a concern with the pain of these people, interjects into the global politic a problem that demands some solutions. Each life is precious, and each death should have some meaning. Palliative care supports and gives alternative meanings to suffering in a global community.
Bibliography
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Carresse J, Rhodes LA. Western bioethics on the Navajo Reservation: benefit or harm? JAMA. 1995;274 (10):826-29.
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