Death: I. Cultural Perspectives

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I. CULTURAL PERSPECTIVES

What is death? How do we understand its meaning? Since death cannot be directly apprehended by straightforward scientific means, culture provides the key medium for comprehending the final boundary between our existence as living beings and the eventual end of that existence. Death is a fact of life, but awareness of mortality is a social, not a biological reality. Knowledge about death and its meaning and value is socially constructed. How should we account for profound differences across the world and throughout history? In some societies, elders choose to end their own life via exposure to the elements, to avoid being a burden to the wider community—the perhaps apocryphal Eskimo on an ice floe narrative—which provides a powerful image whether supported by the ethnographic evidence or not. Or mothers may withdraw their love and attention from an infant deemed unlikely to survive in an impoverished environment like the slums of northeastern Brazil.

In contemporary U.S. society, through a combination of technical prowess, institutional arrangements, and bioethicsgoverned procedures and practices, we elect to maintain the liminal—betwixt and between—existence of patients suffering from persistent coma, maintaining their biological lives in specialized ventilatory-care units. Others may decide to have their brains or bodies "cryopreserved" after the moment of physical, cardiopulmonary death, in response to internet advertisements. The native inhabitants of the Amazon, called the Wari, respect their dead, and assuage their grief, by engaging in ritual mortuary cannibalism. How might the profound range of cultural variability in organizing death inform bioethics debates about the morally right management of death and the end of life?

This entry examines the intersection of death, culture, and bioethics, taking the disciplinary perspective of anthropology, the field most associated with the analysis of culture. The scope is both broad, examining conceptually the ways in which the experience of death is culturally constructed within particular social and historical moments, and narrow, detailing the growing body of knowledge about the influence of an increasingly globalized biomedicine (and "the ethics" of that medicine, bioethics) on the experience of death and dying in multi-cultural societies (Kaufman; Conklin; Scheper-Hughes).

Intersections of Death, Culture and Bioethics

When cultural difference is considered, we generally think of differences among people from varied ethnic backgrounds in a diverse society, or of clashes emerging in the face of immigration or forced migration of populations. In homogenous societies, for example, when healers', patients', and broad social expectations about death are concordant, cultural difference may be transparent and cultural conflicts rare. In diverse societies, ethnic and cultural background influences all aspects of healthcare, nowhere more profoundly than when death is near. Even patients and families who appear well integrated into a diverse society such as the United States may draw heavily on the resources of cultural background (particularly spirituality) when experiencing and responding to death. When cultural gaps between families and healthcare providers are profound, accentuated by language barriers and varied experience shaped by social class, negotiating the difficult transitions on the path from life to death, always a daunting challenge, becomes even more difficult.

We argue that all domains of end-of-life care are shaped by culture, including:

the meaning ascribed to illness;
the actual language used to discuss sickness and death (including whether death may be openly acknowledged);
the symbolic value placed on an individual's life (and death);
the lived experience of pain and suffering;
the appropriate expression of pain;
the styles and background assumptions about family decision making;
the correct role for a healer to assume,
the care of the body after death, and
appropriate expressions of grief.

When the patient's family and healthcare providers do not share fundamental assumptions and goals, the challenges are daunting. Even with excellent and open communication—the foremost goal of culturally, and ethically, appropriate care—barriers remain. Differences in social class and religious background may further accentuate the profound challenge of defining and implementing "good" end-of-life care in healthcare systems serving increasingly diverse societies. The conceptual challenge for bioethics is defining the good in such situations, and making certain that recommendations for respecting cultural difference serve both pragmatic and principled goals (Sprio, McCrea Curnen, and Wandel).

When dealing with concepts as totalizing, but slippery as culture, and as seemingly precise as death, it is useful to begin by considering the definitions and basic concepts used by other disciplines.

Anthropological vs. Philosophical Approaches to Death

It is helpful to consider how taking an anthropological or cultural approach to the study of death differs from the approaches taken within philosophy, where the mystery of death has been a topic of debate and discussion for thousands of years. Philosophy has attempted to account for death conceptually, and more recently in terms of developing criteria for judging when death has occurred. Death is a state following upon the end of life; it is the absence of life. Death is a mystery, but is it more mysterious than other phenomena that we do not understand? Philosophers have tried to ask what death is, and in general have encountered serious definitional difficulties, stemming primarily from the problem of how one defines life.

A question of key philosophical interest was posed by the Epicurean philosophers, and most clearly articulated by Lucretius, who asked, "Is death bad for you?" His basic argument, that since the dead person no longer exists, death cannot be "bad" for the individual who dies, has been influential in the subsequent philosophical discourse on death. By contrast, cultural critiques begin with a set of social questions that move beyond the individual: How do different societies manage the existential fact that all members will eventually die, and the practical implications of the death of individuals, including the reintegration of survivors of a death? What role do healers and healing systems play, if any. Ethnographers, whether of tribal and hunter-gatherer societies or of a contemporary intensive care units, have a quite different task than the philosopher: describing the range of culturally patterned responses to the existential realities of eventual human frailty and death.

Death and the Birth of Bioethics

Death has been an essential focus of bioethics since the inception of the field nearly four decades ago (Jonsen). Dealing with the challenges of a dramatically changed biomedical landscape was, in fact, one of the main driving forces in the field's birth. One could argue that bioethics in its current form exists partly in relationship to its encounters with death, to birth pains peculiar to the unique cultural environment of the United States, where the field first crystallized into a new discipline. Following the successes of post-World War II clinical medicine, in particular the development of the mechanical ventilator, and its increasing use outside of its original site—in operating theaters and post-anesthesia recovery—the question arose: When is a patient beyond hope for a meaningful recovery and when is a patient whose heart and lungs are being continued by artificial means actually dead? (Veatch). The first heart transplant in 1968 added the complexity of figuring out when someone was "dead enough" for their organs to be harvested for transplant recipients.

A series of seminal legal cases, many receiving widespread attention, such as the cases of Baby Doe and Karen Ann Quinlan, revealed the fundamental ambiguities of medicine's power to combat death. Recognition of these ambiguities lead to the creation of a series of presidential commissions to debate and reflect on topics such as criteria for establishing brain death, and appropriate procedures for withholding or withdrawing potentially life-sustaining technologies.

Cultural analysis takes account of developments in technology but does not require a determinist position. The argument is not that new medical technologies transform cultural understandings of death in a straightforward, linear way. Rather, the meaning of any new medical procedure to forestall death will be developed and gain significance against a specific cultural background. Since understandings of technologies are inevitably culturally shaped, they are never neutral but their development is affected by the existing cultural milieu and once in use, cultural context affects how they are used. Thus, most researchers in science studies accept a view that the meanings of new medical technologies are co-constructed, rather than determined, they are in a way amalgams of social practices and technical objects; one must understand both in order to have the full picture. A totally implantable defibrillator to save patients from sudden death will not have a specific meaning in an environment where medicine's goal is to intervene in every death. Another society might question the use of certain procedures, such as resuscitation, in the situation of an expected death. The same dynamic affects "low tech" interventions like feeding tubes. Against the background of a long-standing cultural adage that "dying on an empty stomach" is a horrific fate, the surgically-implanted feeding tube will take on one sort of meaning. In another environment, where freedom from tubes and bodily interventions is highly valued, another outcome is likely. As the use of technologies intensifies, indeed, as patients begin to be defined as dying only after they have failed all readily available interventions, we might speak of death occurring in technological time (Muller and Koenig 1988).

Cultural Perspectives on Death

Exact definitions of culture are elusive, like the concept itself. At the most general level, culture is defined as those aspects of human activity that are socially rather than genetically transmitted. Thus culture is patterns of life passed among humans. Definitions are often so broad as to be meaningless, applying to every domain in society: religious beliefs, folk practices, language use, material objects, worldview, artistic expression, etc. According to pioneering anthropologist Robert Lowie, culture "is, indeed, the sole and exclusive subject-matter of ethnology [anthropology], as consciousness is the subject matter of psychology, life of biology, electricity as a branch of physics" (orig. 1917). "In explanatory importance and in generality of application it is comparable to such categories as gravity in physics, disease in medicine, evolution in biology," Alfred Kroeber and Clyde Kluckhohn wrote in 1952 (see Kuper for an overview).

With a category this broad, boundaries are difficult to delineate. Anthropologists have become critical of the application of the culture concept (Kuper). The work of Clifford Geertz moved the field of anthropology in the direction of interpretation, transforming culture from a passive noun to an active verb. "Man is an animal suspended in webs of significance he himself has spun; I take culture to be those webs, and the analysis of it to be, therefore, not an experimental science in search of law, but an interpretive one in search of meaning (p. 5)." In biomedicine the dangers of an essential view of culture are clear. We cannot simply read culture in patients facing death or indeed any clinical encounter, discerning their views, desires, and needs with false security based on knowledge that culture A holds view B about disclosing a terminal prognosis to a patient, and culture C holds view D.

The origins of the culture concept date back to the work of early post-Enlightenment folklorists, such as Herder, who made use of the concept to avoid the uniform, totalizing theories of human capabilities that were characteristic of the late eighteenth century. The modern concept of culture developed much later, partly in response to racist (and biological determinist) ideologies of the nineteenth century, most incorporating an evolutionary framework based on social Darwinism. The species homo sapiens was viewed as divided into separate sub-species or races, each with engrained, essential characteristics, a system that included a hierarchy of moral worth.

Philosophers maintain that a general problem with the culture concept is that it is often linked with a naïve relativism which precludes judgments about the unique cultural practices found around the world. Indeed, in some instances this criticism is warranted; attention to the diversity of cultures and the need to judge each on its own terms is central to the field. However such attention to cultural relativism at the empirical level does not necessarily lead to a stance of ethical relativism. Often practices dealing with death that were unsettling to Europeans, such as head hunting and cannibalism, were the focus of disproportionate attention, supporting efforts to justify and document a radically different "other" (Conklin).

The history of anthropological engagement with mortality dates back to the origins of the discipline, and is bound up with concerns about the origins of religion. Early theorists focused on small scale societies where magic, science, and religion are not separate cultural domains. For example the nineteenth century anthropologist Edward Tyler, who worked from an evolutionary paradigm of explanation, saw the origins of human society and culture in efforts to explain mortality, and in particular, in the recurrence of dreams and other visions about deceased close kin. The "savage philosopher" reflected on everyday experience and developed the notion of the soul. In Magic, Science and Religion Malinowski wrote,

Of all sources of religion, the supreme and final crisis of life—death—is of the greatest importance. Death is the gateway to the other world in more than the most literal sense. According to most theories of early religion, a great deal, if not all, of religious inspiration has been derived from it.… Man has to live his life in the shadow of death, and he who clings to life and enjoys its fullness must dread the menace of its end. Death and its denial—immortality—have always formed, as they form today, the most poignant theme of man's forebodings. [Experience] at life's end condensed into one crisis which provokes a violent and complex outburst of religious manifestations. (p. 47)

Social theorists influential to the development of anthropology, such as Émile Durkheim, and later Robert Hertz, argued that all societies exert institutional controls to protect and preserve the lives of members, including rules governing appropriate and inappropriate killing. Many actions that appear to be individual choices, such as suicide or the expression of emotion during grieving, are actually socially patterned, as studies such as Durkheim's comparative analysis of suicide rates, one of the first uses of statistics in social science, illustrate (1951 [1897]). Hertz used cross cultural comparisons of mourning rituals to suggest that the human expression of grief can also be best understood as a social fact, particular to each society (1960 [1907]).

For reasons that have been the subject of extensive internal critique within anthropology (Rosaldo; Behar), until fairly recently the field concerned itself primarily with the rituals following death. This included ceremonies that focus on the disposal of the dead body and occur after cardiopulmonary death generally, although not always. This concern with ritual practices and symbolic meaning precluded a full engagement with the profound emotional significance of the process of dying, grief, and loss. Scholars focused on the recurrence throughout the world of death rituals that expressed fertility and rebirth (Bloch and Parry). The emphasis on sexuality, and the connection between sex and death, fit well with interpretations of ritual behavior that emphasized function. Death rituals serve the function of reintegration of society following a death, focusing on reproduction.

In some societies this symbolic link between death and regeneration is expressed explicitly; funerary practices incorporate the abandonment off usual standards of sexual propriety for a confined time period, or allow and encourage sexual relationships between categories of kin where such contact was generally excluded (Barley). These rites de passage seemed designed to guide the passage of humans through dangerous, liminal transitions, marking the boundary between life and death. Thus van Gennep (1960 [1909]) saw associations between funerals and other rites of transition, such as initiation ceremonies. In contemporary U.S. hospitals, the practices of bioethics developed in the last decades have become the new rituals guiding these transitions between life and death. A number of studies in anthropology (and medical sociology) examine contemporary death practices in biomedical settings, such as Bluebond-Langner's 1978 account of disclosure of a terminal diagnosis to children under treatment for leukemia, or Sudnow's 1967 account of dying in a public hospital. Christakis examines contemporary practices in foretelling death (1999). Other recent ethnographies chronicle the experience of death and extreme old age for specific populations, for example elderly Jewish immigrants (Myerhoff).

Defining the Boundary Between Life and Death

The concept of "social death" has been of considerable utility in describing the varied boundaries between life and death throughout the world. Nigel Barley, who has written an accessible account of the range of cultural practices surrounding death, describes his alarm and confusion when an African informant tells him casually that his wife "died" that morning, in the midst of a conversation asking him for a cigarette. In reality, she had been, in western terms "unconscious," but the Dowayo make no distinction, either linguistically or conceptually, between death-like states that are reversible (what we might call coma, persistent vegetative state or perhaps suspended animation) and that which continues permanently. This view of death provides a sharp contrast to biomedical definitions that assume irreversibility. (Although it is important to remember that even in the West, belief in resurrection calls the finality of death into question for many, and forms a core of religious belief.)

Studying ideas of death, of course, also reveals views on life and what it means to be human. The idea of social death is intimately tied up with notions of personhood, and who counts as a person within a society. Social death has utility in analyses at both ends of the human lifespan. Anthropologists have observed and documented societies in which full term infants are not considered fully alive, and thus members of the social group, until they have survived the first month of life (perhaps not by chance the period of highest vulnerability for a newborn) and received a name in a formal naming ceremony. Those who die before naming are not considered fully human—we might say that the social group does not recognize the infant' personhood—and thus do not warrant ritual attention, such as funerals or elaborate mourning rituals. Such practices are in sharp contrast with contemporary obstetrics practices in the first world, where developing fetuses are named and ultrasound images are exchanged prior to birth. Indeed, the very survival of extremely premature infants in neonatal intensive care units is best understood as an artifact of culture. In other societies specific kinds of birth—such as twins—or certain infants may be judged as incompatible with life, and thus viewed as already dead or infanticide may be allowed. In Bariba society (in Africa), certain infants are understood to be witches, and thus mothers are not allowed to grieve the loss because the infant is defined as not human (Sargent).

Social death is also a useful concept for describing practices near the end of life. In some societies, ritual mourning practices may begin before cardiopulmonary death occurs, since the ill or extremely aged person is viewed as meeting cultural criteria for social death. Or those who are very old may be viewed as almost dead. Many have argued that the warehousing of the elderly in sub-standard U.S. nursing homes constitutes a form of social death. In a series of pioneering ethnographic studies of hospital-based death in the U.S.—in the immediately "pre-bioethics" period—Glaser and Strauss conceive of the isolation of the dying as a form of social death (1965; 1968).

Arguably the most important example of social death in contemporary biomedicine is the notion of "brain death." A body maintained in a modern intensive care unit, pink, with heart beating and lungs inflating and deflating, appears to most observers as a living being. Yet a diagnosis of brain death results in that person's abrupt transition to a socially recognized state of death, and transforms the corpse into a container to house organs awaiting harvesting for another donor. A detailed analysis of the historical development of the concept of brain death, as well as a chronicle of contemporary brain death debates is found in Margaret Lock's 2002 Twice Dead. Lock uses a classic anthropological technique called the comparative method to reveal how culture shapes seemingly technical scientific and medical practices. The state of brain death appears to follow the straightforward application of a set of technical criteria about the functioning of the human brain. Lock tells the story of Japanese resistance to organ transplants that require the use of a brain dead patient. By contrasting Japan and the U.S., she reveals how the category of social death can only be understood in cultural context. In Japan, the core site or physical location of personhood is associated with the heart, not the brain. However, Lock makes it clear that the story is not simply about "traditional beliefs," rather many features of contemporary Japanese society—including distrust of the medical profession—play a role in widespread resistance to organ harvesting from brain dead donors.

New Rituals of Dying

For most in the wealthy, developed world the idea that death is an evil to be prevented at all cost, including the use of aggressive therapies like the totally implantable artificial heart, is commonplace. Buoyed by past successes, the arc of medical practice has extended to the moment of death, which increasingly is seen as a process to be stopped whenever possible. As new technologies became available, seeing a patient in cardiac arrest necessitated an action. Resuscitation, in reality attempts at resuscitation, became routinized and normalized at the moment of death (Timmermans). By the late 1960s dying within the sphere of biomedicine became defined as a problem in need of a solution.

The outcome of the many commissions, legal cases, and academic discussions described by Jonsen in the Birth of Bioethics (1998) is a set of novel, autonomy-based practices that seek to enhance the self-determination of the dying, and protect patients from the abuses of overzealous physicians "programmed" by their instrumental training to over treat, prolonging the dying process. These practices incude:

formal implementation of advance care planning (and execution of advance directives), institutionalized by law following the passage of the American "Patient Self-Determination Act" in 1991;
explicit discussion and decision making about the use of cardiopulmonary resuscitation, or DNR orders;
open discussion of diagnosis/prognosis and shared decision making about foregoing or withdrawing curative interventions; and
transition to "palliative care" or, in some cases, hospice.

Of course this ideal narrative is rarely followed. All of these practices required a commitment to open and full disclosure of information about death and detailed discussions about how one wishes to die, and assumed that the patient himself—and a gendered pronoun is used purposefully—was in full control of his destiny and fate. The model is gendered male by the focus on individual agency and control, as opposed to the inevitable interdependence of a dying person with her social environment.

What Differences Make a Difference?

Thus far, only broad cultural responses to death have been considered. With increased border crossing and south/north migrations throughout the world, how should we view and define difference in bioethics? Turning to contemporary biomedicine, considerable research documents the relevance of ethnic or cultural and religious differences in the experience of death and dying and in clinical approaches to end-of-life care. However, health researchers and clinicians generally do a poor job of making clear analytic distinctions among the key elements of difference, in answering the question, "What differences make a difference?" When we talk about cultural difference, do we mean a patient or family's voluntarily adopted and expressed ethnic identity, their nation of origin if recent immigrants, their race as assigned by a government enforcing discriminatory laws such as segregation or apartheid, or their adoption of specific health-related practices such as diet or use of medicinal herbs? In healthcare research there is considerable confusion in terminology, particularly with regard to the use of the term "race."

The lack of consistency in the use of terminology for concepts of race, ethnicity, ancestry, and culture is manifest in the wide variance in terms used to describe individual and group identities. Terms such as white, Caucasian, Anglo, and European are routinely used interchangeably to refer to certain groups, whereas black, colored, Negro, and African-American are used to refer to comparison groups. Also, white-black comparisons are straightforward in contrast to the confused use of terms such as Hispanic and Asian. Both of these labels, one based on linguistic criteria and the other on continental origin, lump together many populations of people reflecting enormous variability in factors related to health and medical care. The terms we use gloss over enormous diversity.

Debates in the biomedical literature focus on the appropriate use of terms such as race, ethnicity, and culture. Asking how race is relevant to bioethics, death, and end-of-life care is relevant, but caution is needed whenever the category of race is invoked. Much is "at stake" in how these categories of difference are utilized when conducting research or in designing programs to improve the care of patients, by way of enhancing the cultural competence of healthcare providers who must aid patients and families in decision making at the end of life. In particular, approaches to conceptualizing disease etiology or health outcomes may have moral significance if one naïvely assumes that culture predicts behavior in a precise way or that something essential or inherent in a certain population leads to poor health outcomes or barriers to healthcare access (Gunaratnam).

In the case of black-white differences in infant mortality or homicide rates, for example, how one thinks about causation, and the relative contribution of genes, environment, and social structure, may determine the type of intervention recommended. Meaningful genetic and biological differences do not always map clearly onto social categories of human difference, whether defined as race, ethnicity, or culture. American patients who self-identify as African American generally seek more aggressive care and are underrepresented in hospice services. If we talk about racial differences about preferences for palliative care services, what exactly do we mean? In the United States efforts to tease apart the independent contributions of race and socioeconomic status (SES) when analyzing healthcare outcomes may be daunting.

Although the dimensions of difference most relevant to end-of-life care are likely to be social or cultural, biological or genetic variation may also be germane. For example, the field of pharmacogenomics tracks individual and group differences in drug metabolizing enzymes to predict response to medications such as chemotherapy or pain medicines. Although classic understandings of human "races" do not parallel actual genetic variation at the molecular level, there may be frequency differences among socially defined populations relevant to pharmacogenomics. It has been known for decades that there is ethnic or cultural variation in the expression of pain or painful symptoms (Zbrowski; Garro); the degree of variation in the actual experience of pain—possibly modulated through the action of pain medicines—remains unexplored.

Immigration status is another key category of cultural difference. Recent immigrants provide challenges to the healthcare system, particularly in end-of-life care. In much of the world, the American ideal of open disclosure of information about diagnosis and prognosis is not the norm (Gordon and Paci; Die Trill and Kovalick). In fact, patients and families may experience the directness about diagnosis characteristic of U.S. healthcare as needlessly and aggressively brutal, violating norms espousing "protection" of theill. Although children may be seen as more in need of protection than adults, much pediatric palliative care literature recommends openness, appropriate to an ill child's age, as preferable to concealment. U.S. bioethics procedures governing end-of-life care may seem unfathomable to those newly in this country, but it is perhaps the assumptions of bioethics that are culturally bound. As Die Trill and Kovalick note, "Those who argue that children always should be told the truth about having cancer must recognize that the truth is susceptible to many interpretations" (p. 203). Whether the dying person is a child or an adult, family members who object to sharing the full differential diagnosis with an ill child may be accused of being "in denial" about the severity of the patient's illness, their concerns "psychologized" rather than understood. Lastly, the experience of those immigrants who are refugees from political violence or war adds another dimension. The effects of multiple losses on family members—including the death of other children and adults in the family, one's country, one's entire history—are difficult to predict but clearly shape a family's response to the serious illness and threatened loss. Responses may appear to be overly stoic or overly emotional.

When considering societies with histories of deep racial divisions, it is especially important to separate analytically the concepts of culture, ethnicity, and race from the effects of social and economic status. Historically underserved populations may have special barriers to end-of-life care that have little to do with difficulties in communication and are not related to their identification with a certain set of ethnic traditions. Culturally specific values and beliefs often exist, but may not be of signal importance. In a ground-breaking study, an American physician documented the lack of availability of narcotic analgesics in minority communities such as Harlem (a low income, historically African American and Hispanic neighborhood in New York City); pharmacies simply did not carry the opiates that are "state-of-the-art" drugs for pain control (Morrison, Wallenstein, and Natale et al.). The American "drug wars," including the recent battles about the abuse of time-release opiates like oxycontin, are often fought in poor neighborhoods with limited access to legitimate employment. Patients from minority backgrounds may not receive adequate pain control if drugs are not prescribed because of fears of theft or abuse. When members of the healthcare team are hesitant to prescribe narcotics it may be a legitimate concern based on factual information about a particular family's drug history, or it may be the exercise of racial stereotyping. The end result is the same: patients may be denied needed pain relief.

The experience of people with sickle cell disease, whose pain is often undertreated because of concerns about drug abuse, is another example of stereotyping. Culture thus contributes to inadequate symptom management, but indirectly, through the actions of healthcare providers, not the essential cultural characteristics of a population. Research in a Los Angeles emergency department documented that Hispanic patients with injuries identical to whites were given less analgesic medication (Todd, Samaroo, and Hoffman). Do patients in such situations have different cultural values about analgesia? Can they exercise full autonomy when faced with decisions about foregoing or withdrawing life prolonging therapies? Surely not, without the assurance of adequate analgesia and palliative care.

Karla Holloway's Passed On: African American Mourning Stories (2002) vividly reveals how the unique history of Blacks in the U.S.—including the legacy of slavery, Jim Crow policies, and violent death, such as lynching—shape the experience of death for patients receiving care in hospitals that were segregated two generations ago. Clearly difference is relevant to bioethics; assuming that end-of-life procedures and practices have universal applicability is at best naïve and at worst harmful. In addition to the varieties of cultural and social class differences described here, other domains of difference that intersect with culture, such as gender, sexual orientation, disability, and religious background, must also be considered within bioethics (Parens).

Culture Matters: Bioethics, End-of-Life Care and Decision Making

In its report detailing needed changes in care of the dying, the Institute of Medicine has recommended attention to cultural diversity as a national policy objective (Field and Cassel). There is a growing literature based on empirical studies documenting the cultural dimensions of end-of-life care for patients and families. (For reviews see Kagawa-Singer and Blackhall; Koenig and Davies; Crawley, Marshall, and Koenig). Based on this literature, it is possible to identify the key domains of clinical significance in caring for patients from diverse ethnocultural backgrounds who are unlikely to survive.

In general, the cultural challenges of end-of-life care can be divided into two fundamental categories: those that do, and those that do not, violate the healthcare team's foundational cultural values, norms that may also be enforced by legal requirements in some societies. In the first category are cultural values or practices that call into question the biomedical goal of combating disease and extending life at all costs. A family who refused to allow a potentially curative limb amputation for a female child with osteosarcoma because of beliefs about the need to preserve bodily integrity, and a daughter's marriageability, would immediately create consternation for healthcare team members. By contrast, another family who wished to engage a spiritual healer to pray for a successful outcome to the same potentially life-saving surgery would not create a cultural crisis, since the family's goals could easily and effortlessly be incorporated into the clinicians' care plan.

Generally, issues such as care of the body after death do not provide a fundamental challenge to biomedical values and beliefs; thus customs prescribing particular approaches to post-death care are relatively easy to implement unless they violate laws governing disposal of the body. However, even in post-death care there may be situations that lead to cultural conflict, such as requests for autopsy or organ donation in situations where the wholeness of the body is highly valued. And the domain of grief counseling and bereavement care may or may not elicit conflict. For medical specialists focused on cure, less is "at stake" once a patient has died and can no longer be saved, but conflicts may still emerge over differing definitions of acceptable grieving practices.

Family Roles and Responsibilities in Shared Decision Making

Within the current conventions of bioethical decision making about end-of-life care for a competent adult patient, the decisions are left up to the individual; theoretically the family or broader community is not critical to the patient's choices. Autonomy is the primary value at play. In the case of children or the severely mentally incapacited, where family members become surrogate decision makers, the situation is much more complex. A growing body of research documents how autonomy-focused bioethics practices may not adequately meet the needs of patients from diverse backgrounds. The value of respect for individual autonomy is not universal. Patients may express confusion and ambivalence when asked to participate in advance care planning about death (Frank, Blackhall, and Michel).

Disagreements about the goals of care, although rare, are emotionally difficult for all. In many cross-cultural situations, the Western view that individual patients will (and should) make decisions about care may be too narrow. In some societies a social unit beyond the nuclear family may also have considerable decision-making authority. Elders in an extended family or clan group may expect to be involved, and patients may desire this. Integrating extended family or kin groups into care in a Western hospital, hospice, or nursing home is hard but may be desirable. Gender may play a role as well. In traditional male-dominated societies, mothers may never have experienced the level of decisionmaking authority automatically granted to both parents in the United States. This may be a source of tension. Similarly, the evolving practice in pediatrics of requesting "assent" to care by older children, especially girls, may create tensions within the family.

A further dynamic may result from the ideal "shared decision-making" model. Tilden and colleagues have documented stress among family members involved in decisions to withhold treatment. The impact of family involvement in decisions to terminate treatment has not been studied extensively. Inexperienced clinicians or trainees may present decisions about limiting painful or aggressive procedures, sometimes an opening to a transition to palliative or hospice care, in an insensitive way, making it appear that the family decision makers must give "permission" for futile care to be withheld. Although the family's involvment in making decisions on behalf of their loved one is expected, few individuals, regardless of their cultural background, are able to do this easily. In fact, the resistance to giving up hope and explicitly limiting therapies found among families from diverse backgrounds may be appropriate. Models of care that do not require that curative therapies be abandoned in order to obtain excellent palliative services may ultimately lessen this problem. Patients or family members should never be told that care will be withheld; rather the focus should be on meeting the needs of the patient and family.

Varied Understandings of the Role of Health Professionals or Healers

Just as the appropriate role of parents or family members caring for a seriously ill person may vary, the families' expectation of the role played by health professionals may differ. In some societies, healers are expected to make a diagnosis almost magically, perhaps by feeling the pulse without asking any questions. Healers may exert considerable power and authority; they may expect and receive deferential behavior. Patients and families schooled in these traditions may be confused by the shared decision-making ideals of Western practice. They may lose confidence in physicians who do not appear to know unequivocally the correct course of action but instead ask for the patient's views.

In many societies the roles of healer and religious specialist intersect. "Each religious tradition has its own images and ideals of the doctor, in which the individual engaged in healing is defined as enacting some of the highest ideals of the tradition itself" (Barnes, Plotnikoff, Fox, and Pendleton). The healer's role at the end of life may be particularly meaningful, or it may be proscribed to take on the care of those not expected to survive, as in the Hippocratic tradition.

Families who have been denied access to healthcare providers may also question the trustworthiness of the "establishment" health system, worried that those in power do not have their best interest at heart. The disparities in morbidity and mortality across U.S. populations suggest that often African-American patients receive less intensive care. The irony is that research on end-of-life decision making in adults reveals that minority patients may actually desire more aggressive care near the end of life (Caralis, Davis, Wright, and Marcial; Tulsky, Cassileth, and Bennett).

Communication Barriers: The Need for Translation

Negotiation about the appropriateness of clinical services for patients nearing the end-of-life is a complex task when healthcare professionals, patients, and family members share fundamental goals and assumptions. By no means has a successful "formula" for such communication been established. When cultural barriers exist, particularly those created by language, the goal of open and effective communication is exceptionally difficult. Language translators may be available only intermittently, and are often poorly trained. In 2002, two hospitals in Brooklyn, New York, that routinely serve large numbers of Spanish-speaking patients were sued for failure to provide translation services, examples of a number of such legal actions dating back several decades.

The task of language translation in the arena of ethical decision making and end-of-life care is particularly complex. How does one translate a discussion about a "do not resuscitate" decision to a family with no previous experience of cardiopulmonary resuscitation (CPR), and no prior knowledge of the American bioethics tradition of requiring permission not to offer CPR, even to a patient who is actively dying an "expected" death, or may be frail because of extreme old age? What if the language characters representing resuscitation are interchangeable with those suggesting the religious concept of resurrection? Although it sounds odd from the perspective of Western, scientific understandings of death, who would not elect to have themselves or their dying loved one brought back to life if offered the choice in those words? How might medical interventions at the moment of death be understood among practitioners of Buddhism who believe that rituals spoken during the dying process guide the "soul" through dangerous spiritual territory and ultimately determine where and how a person will be reborn? How do you negotiate with a family about the location of death—home versus hospital—against a cultural background where speaking of an individual's death is thought to bring it about or where certain illnesses cannot be named? The use of family members as interpreters, which may be unavoidable, may make discussions such as these even more problematic. Family members may see their primary role as protecting others in the family from harm and thus "shield" them from information viewed as harmful. Such shielding is counter to bioethics norms of open disclosure.

Furthermore, models of professional translation, such as those employed in courtrooms where relationships are fundamentally adversarial rather than collaborative, assume that language interpreters should function as neutral "machines." Healthcare providers need to be aware that translation services such as those available by phone from AT&T may be based on legal models of interpretation. This stance ignores the interpreter's potential value in providing information about the family's cultural background, as well as providing language interpretation. When interpreters are engaged as full partners in providing care, they may aid in negotiations about difficult end-of-life dilemmas (Kaufert, Putsch, and Lavallee). When included as part of the healthcare team—for example, in programs where native speakers of commonly encountered languages are employed as bilingual medical assistants—interpreters can also serve the useful function of explaining the culture of biomedicine, and the seemingly peculiar assumptions of bioethics, to families.

Integration of Alternative and Complementary Medicine into Palliative Care

Patients and their families may be subject to strong pressures to utilize "ethnomedical" practices and procedures believed to be efficacious. Recent immigrants may utilize products obtained abroad or from Mexico and Central America. Practices vary widely, including acupuncture for pain, cup-ping or coining, dietary prohibitions based on "hot-cold" belief systems, Chinese herbal products, Ayurvedic patent medicines, and full-blown rituals including chanting and the sacrifice of animals. A skilled practitioner creates an open environment in which the patient, family, and perhaps a ritual specialist from the community may openly discuss the appropriate blending of biomedically sanctioned medicines and procedures with ethnomedical products. Although some patent medicines and food supplements are known to be harmful and may actually contain potent pharmaceuticals, the healthcare team is unlikely to obtain a full accounting of all treatments used for a particular dying patient unless a nonjudgmental attitude is maintained. This may be a challenge when a healthcare provider must compromise his or her own "ideal" care.

The need to integrate alternative and complementary medicine into palliative care is not limited to patients from particular ethnocultural communities. Research documents that a large percentage of Americans have utilized "alternative" medicine in the recent past (Eisenberg, Davis, Ettner et al.), with prayer being the most widely utilized practice (82 percent of Americans believe in the healing power of personal prayer) (Barnes, Plotnikoff, Fox, and Pendleton).

The Meaning of Pain and Suffering

End-of-life care has as a primary goal the relief of pain and suffering. Cultural difference is relevant to pain management in multiple ways. The effectiveness of symptom management may be lessened by economic barriers to medicines or special treatments. Cross-cultural research with adult patients has documented differences in the way people experience and express pain (Garro). What is considered acceptable way to express painful symptoms? Is stoicism rewarded? Are there gender differences in outward discussion of painful symptoms? Spirituality may have an impact on the meaning of suffering and hence on the management of symptoms. A study of infants and children with a rare genetic disease (recombinant 8 syndrome) in long-time Spanish-speaking residents of the American Southwest revealed the complexity of suffering. The experience of affected children in these devout Catholic families was thought to mirror Christ's suffering, providing meaning to an otherwise unexplainable tragedy (Blake).

Defining the Boundary of Life and Death

Biomedical definitions of death, including the concept of brain death, appear to be clear cut. However, when examined closely considerable ambiguity remains. Even among biomedical professionals one frequently hears confusion in language when speaking, say, about an organ donor who is technically brain dead, but may appear to be as "alive" as adjacent patients in an ICU. Linguistically, these brain-dead bodies experience a second "death" once organs are retrieved for transplantation and ventilatory support is removed (Lock). It is thus not surprising that patients and families can also become quite confused about states resembling death, including brain death, the persistent vegetative state, or coma (Kaufman).

Disputes arise when a patient meets the biomedical criteria for "brain death," but the family refuses to allow withdrawal of "life" support. In a masterful essay, Joseph Fins describes two clinical negotiations about withdrawing life support from children defined as brain dead (1998). In one case, the hospital team engages the family's orthodox rabbi and other religious authorities in a complex series of negotiations, respecting throughout the family's view that the patient is not truly dead and that only God can declare death. A more contentious case involves an African-American family who maintains a stance of mistrust toward the healthcare establishment in spite of every effort on the part of the clinical team. The family's past experience shaped its understanding of the team's intentions in spite of great effort to gain their trust. Disputes such as these are the "hard" cases, revealing cultural clashes that cannot be ameliorated simply by motivated clinicians, sensitivity, or excellent communication skills, although clearly those things may keep conflict to a minimum or may keep small cultural disputes from erupting into major pitched battles.

Work has focused on care of the body after death, particularly the question of autopsy, since in some societies the body is considered inviolable after death; its contents sacred and necessary for the individual's appropriate survival into the afterlife. These cultural practices were most fully-developed in Egyptian dynasties, where funeral practices and preparation for life after death—including mummification and building of elaborate tombs—consumed the society's symbolic attention and material resources. The acceptability of autopsy, or other uses of the body following death, is deeply sensitive to cultural and religious prohibitions. Knowledge about the acceptability of autopsy, or requests for organ donation in the case of acute trauma, cannot usually be guessed by "reading" a family's background.

Furthermore, different ethnocultural groups may have varied understandings of the nature, meaning, and importance of cognitive impairment in a patient. In a society where social relationships are a core value, esteemed more highly than individual achievement, disabilities that affect intellectual functioning but do not interfere with the ill person's role in the family may be more readily "accepted." By contrast, in some societies severely handicapped people may experience a form of social death, isolated from the broader community.

Acceptance of Hospice Philosophy

Utilization of hospice care programs is not identical across racialized U.S. populations. African Americans utilize hospice services at a lower rate than do European Americans. Home death is often considered an ideal within the hospice philosophy. A good death is often characterized as one that takes place at home, surrounded by family and/or friends, with pain and symptoms under control, spiritual needs identified and met, and following appropriate good-byes. Traditionally, this ideal good death required giving up curative interventions. At the moment in U.S. history, the 1970s, when hospice care became a viable alternative, aggressive end-of-life interventions were commonplace, and efforts to secure patient participation in decision making were not yet fully realized. Thus, the home became a refuge from the ravages of hospital death. Even though the strict implementation of a six-month prognosis requirement for hospice is changing, it remains difficult to predict the terminal or near-terminal phase of common illnesses, particularly cardiac, pulmonary, and metabolic conditions, in contrast with cancer. Acknowledging that death is near may be particularly difficult. Home death may not be valued in ethnocultural groups where it is considered inappropriate, dangerous, or polluting to be around the dead. Among traditional Navajo, the dying were removed from the Hogan dwelling through a special door to a separate shed-like room to avoid the catastrophe of a death occurring in the Hogan, which would then have to be destroyed. Burial practices were organized to make certain that ghosts could not find their way back to the Hogan, and family members did not touch the dead body. This task was relegated to outsiders. These issues remain salient for those practicing in the Indian Health Service. In some Chinese immigrant communities a death at home may affect the value of a particular property on resale.

Culture, Grief, and Mourning

Bioethics practices generally focus on decision making prior to death. Clinical interventions to aid the bereaved—increasingly seen as a critical component of services provided to patients and families—must take into account cultural differences. It is critical to acknowledge that Western ways of grieving and disposing of the body are not universally accepted as the right way. It is also likely that our theories of grief and mourning, including definitions of normal, are inappropriately based on Western behavioral norms. For example, a standard way in the West of dealing with grief is to talk-about one's experience, one's relationship with the deceased, one's feelings. But in some cultures, talking may disrupt hard-earned efforts to feel what is appropriate, and to disrupt those efforts may jeopardize one's health. In some cultures, talk is acceptable, but one must never mention the name of the deceased person. In other cultures, talk is acceptable as long as it doesn't focus on oneself. Even in the West, however, not everyone is open to talking. It is important not to label those who do not openly express their emotions as pathological. In fact, the concept of pathological grief is primarily a Western construction. A mother in the slums of Cairo, Egypt, locked for seven years in the depths of a deep depression over the death of a child is not behaving pathologically by the standards of her community (Wikan). There is enormous variation in what is considered appropriate behavior following death. The ideal among traditional Navajo is to express no emotion, while in tribal societies a death may be met with wild outpourings of grief, including self-mutilation (Barley). In contrast to clinical notions of pathological grief, in some Mediterranean societies widowhood was considered a permanent state of mourning, and mourning clothes were worn for years, if not decades. In a compelling book titled Consuming Grief, Conklin describes how native Amazonians assuage their grief by consuming the body of their dead kin (2001). A number of anthologies provide examples of the range of cross-cultural variation in post-death management (Counts and Counts; Metcalf and Huntington; Irish, Lundquist, and Jenkins Nelsen; Parkes, Laungani, and Pittu; Rosenblatt, Walsh, and Jackson).

The Need for Clinical Compromise: A Challenge for Bioethics

Respecting cultural difference may offer a profound challenge to healthcare practitioners' most fundamental values. In perhaps the best "text" explaining the cultural dynamics underlying the treatment of a critically ill patient, Anne Fadiman, in The Sprit Catches You and You Fall Down 1997), offers a detailed account of how the physicians caring for a young Hmong child with life-threatening, difficult-to-control epilepsy ultimately fail her because of their desire to offer her "state-of-the-art" care identical to that offered to any of their other patients. Through her detailed ethnographic account, Fadiman reveals how in this case the physician's quest for the "perfect" treatment was the proverbial "enemy of the good." The parents of the child, Lia Lee, were refugees from the American war in Southeast Asia, illiterate in their own language, with ideas about the cause of epilepsy and its appropriate treatment that were completely at odds with the views of the Western healthcare team. They were not, however, the only participants in the exchange shaped by cultural background and context. Fadiman's work documents the culture of biomedicine, explaining with great clarity how the physician's uncompromising dedication to perfection kept them from negotiating a treatment regimen acceptable to all.

Often in cross-cultural settings it is imperative to learn to compromise one's own clinical goals in order to meet the patient "halfway." Fadiman's book recounts the profound miscommunication between the pediatricians and family physicians involved in Lia's care, the Lee family, and the broader Hmong community. When her parents are unable to carry out a complex regimen of anti-epilepsy drugs, the child is turned over to the state's child protective services agency, provoking a profound and deepening spiral of tragedies. In the end, the physicians wish they had compromised their goals and prescribed a more simple medication schedule. Ironically, the parents' observation that the medicines were making Lia sick proved true in that one of the antiepileptic drugs contributed to an episode of profound sepsis that resulted in Lia's persistent vegetative state. A number of American medical schools assign this book as a required text in cultural sensitivity training. Its brilliance lies in revealing both sides of a complex equation: a Hmong enclave transported to semi-rural California and a group of elite, Western-trained physicians and healthcare practitioners caught up in a drama they cannot understand, not because the Lee family's cultural practices are so esoteric but because they fail to recognize how their own cultural assumptions and deeply held values limit their ability to help the ill child.

The Culture of Biomedicine and Biomedical Death Reflect Features of U.S. Society

National efforts to improve end-of-life care often include the notion that cultural change or promotion of cultural readiness is essential for reform efforts to be successful (Moskowitz and Nelson). Yet, what this cultural change would look like and what barriers to such change exist are rarely itemized. National public awareness campaigns such as "Last Acts" have used a variety of strategies to change the culture of dying in America, including working with the media. For example, one strategy has been to sponsor scriptwriting conferences to encourage widely viewed television programs, such as "ER," to include realistic stories about patients near the end of life. In fact, one episode focused on end-stage cystic fibrosis. Narratives created for television might convey the idea that a comfortable, pain-free death is possible and should be demanded by patients and families as an essential feature of a comprehensive healthcare system. The stories might convey the important lesson that physicians and other caregivers may forgo their most aggressive efforts at cure without abandoning patients. Unfortunately, these efforts at promoting cultural change ignore a fundamental and problematic social fact—a profound cultural resistance to foregoing high technology interventions and giving up hope for recovery. narratives of hope and recovery compete with stories of patients abandoning efforts at cure after a valiant struggle with disease.

Research by Koenig and her team revealed that patients from minority backgrounds, in particular recent immigrants, seemed to lack a sense of the narrative structure of end-of-life care that English-speaking, middle-class European-American families understood more readily. In particular, the idea that patients and families would make an explicit choice to abandon curative therapy, followed by the "limiting" of aggressive interventions like intensive care and cardiopulmonary resuscitation, did not seem to be a story patients understood. Recent Chinese immigrant patients could not answer questions that presupposed a transition from curative to palliative goals; it was simply beyond their experience (Hern, Koenig, Moore, and Marshall). In their worldview, doctors do not stop treating patients. Efforts to change the culture through engagements with the media—encouraging op-ed pieces in newspapers, scriptwriting workshops, and so forth—may educate potential patients about existing approaches in palliative and hospice care.

One cultural barrier is particularly difficult to surmount. Before physicians can recommend palliative care and before patients and families agree to it, in our current system one must first accept the possibility that death is imminent or at least that one's likely survival is seriously limited. Eventually, current reform efforts to introduce palliative care early in a trajectory of disease or illness may decrease the need for patients or families to embrace their own death in order to make a clear transition between curative and palliative modalities of treatment. But it is unlikely that the tension caused by the need to balance conflicting goals will ever dissipate totally.

Even if one embraces the narrative of limiting aggressive treatment and adopting comfort care, including attention to spiritual and interpersonal goals, as a good idea "in principle" for those facing death, there still exists the radically difficult and jarring transition itself, the need to imagine you or your family member as now taking center stage in a particular EOL narrative. It is no longer theoretical but real. The resistance to seeing oneself (or a loved one) in this role is considerable and may prove insurmountable for many. A set of powerful cultural narratives operates to feed this resistance and encourage its perpetuation. Consider, as one example, the heroic narratives of successful research and triumphant cure that are much more often portrayed by the media than stories of failed therapy and excellent end-of-life care (Koenig). The content of public relations materials produced by medical centers and ads published by drug companies conveys powerful cultural metaphors that are directly counter to the mundane realities of palliative care, often focused on managing symptoms such as constipation. Hospital ads suggest that it is vital to "keep shopping" and eventually you will find the program offering the experimental or innovative therapy that will lead to cure. The heroic search for cure is celebrated in media accounts such as the film Lorenzo's Oil or news accounts of a family seeking gene therapy to cure their child's severe, life-limiting genetic illness (Canavan disease). A full analysis of the culture of dying in the United States must acknowledge these powerful counter images.

It is important to bear in mind that such stories and advertisements are features of a particular political economy of healthcare. Unlike providing palliative care, which does not generate an economic surplus for hospitals, administering chemotherapy generates profits even when the likelihood of its success is low or nonexistant. One recent study documents that curative chemotherapy is often given very close to the end of life, when its use may be futile (Emanuel et al.). This is not to suggest that individual physicians are primarily motivated by financial gain when they prescribe chemotherapy that they know has little chance of success. The full picture is a much more complex mix of faith in research, trust in therapeutic rituals as opposed to inaction, genuine prognostic uncertainty, and unwillingness to acknowledge the likely poor outcome of patients one knows well. But it is critical to acknowledge that the economic structure of U.S. healthcare for children creates few barriers for the use of advanced life-prolonging therapies such as chemotherapy or days in an intensive care unit, at least for those with insurance or access to government-funded programs. The most intensive services often generate the highest profits. By contrast, hospice and palliative care programs are often supported by philanthropy; providing excellent palliative care is at best revenue neutral and more often a money loser for medical centers. Thus, the political economy of healthcare supports what Daniel Callahan has called "technological brinkmanship," or the aggressive use of technology until the last possible moment, often leading to its overuse. Culture shapes the realities of care at many levels.

Conclusion: Bioethics, Culture, and Globalization

The experiences of death are culturally constructed within particular social and historical moments. An anthropological account of death takes into account the network of human relationships within which behaviors and practices associated with death and mourning are situated. A cultural analysis of the rituals and symbols evoked by death and dying also suggest the powerful role of social and economic conditions that necessarily define and constrain death experiences, including the treatment of bodies, burial practices, and reactions to grief. Viewed from a cultural perspective, death practices provide an important foundation for understanding the meaning of human suffering in response to loss.

Cultural analysis using ethnographic methods provides unique insights into the nature of bioethics practices that have become the new rituals of dying. These insights will be of increasing use in the context of a globalized biomedicine, which moves bioethics practices into multiple settings, often quite different from the social and historical context that shaped their development. When implemented in societies characterized by an increasing degree of cultural diversity, the limitations of these practices, and their cultural roots and sources, are revealed. Cultural analysis—particularly studies that highlight the response of ethnically different others to bioethics practices—is incomplete if not augmented by attention to the political economy of healthcare. Cultural variability does not determine ones views about death. Rather, we are all shaped by culture, and in turn contribute to dynamic change.

There is a naïve hope that cultural competency training will lead effortlessly to improved outcomes. It may under some circumstances, but significant cultural difference inevitably brings with it true conflicts that may not be resolved, even with ideal, open communication and mutual respect. In some situations, the distance between families and the healthcare team may be too profound to overcome in spite of considerable efforts by all. Anne Fadiman recounts a physician involved in the care of Lia Lee, who lamented that even if it had been possible to send the Lee family to medical school with an interpreter, the difference in world views separating a refugee Hmong family from mainstream Western pediatrics would remain insurmountable.

How one thinks about culture matters. A serious flaw in current cultural competency training in biomedical settings is a simplistic and unsophisticated account of culture itself. It is almost as if there is a belief that culture codes for—and predicts—behavior in the same way that DNA codes for a certain protein. Reductionist approaches to education in cultural difference will inevitably fail because, at best, they teach a few general clues that must be verified through interaction with a family and, at worst, they model an unsophisticated approach to culture that leads to simple stereotyping, thus doing more harm than good. Educational techniques and programs that emphasize an interpretive approach to understanding cultural difference are more likely to be successful.

If one accepts that analyzing the nature of ethical practice, and ultimately improving end-of-life care, is a fundamental goal of bioethics, then bioethics scholars must take account of culture in their work. Culture must be engaged at many levels, not just through a focus of the other. Ethnic and cultural difference in response to bioethics practices—the new end-of-life rituals—must be respected in a sophisticated manner, free of harmful stereotyping. But we must not stop there. Those working in bioethics must engage in a critical analysis of the culture of biomedical science and practice. And finally, they must be active students of the cultural assumptions underlying bioethics itself, interrogating the foundations of the field.

barbara a. koenig

patricia a. marshall

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