Background and Significance
Although death is universal, dying is very much a culturally specific experience. Culture refers to learned patterns of behaviors, beliefs, and values shared by individuals in a particular social group. It provides humans with a sense of identity and belonging, and it gives us a framework for understanding experience. When referring to culture in its broadest sense, the term usually implies a group of people with similar ethnic background, language, religion, familial beliefs, and worldview. Culture is a strong determinant of people’s views of the very nature and meaning of illness and death. Culture also influences whether health-related or end-of-life–related decisions can or should be controlled, how bad news should be communicated, and how decisions (including end-of-life decisions) should be made.
As a result of profound demographic changes that affect many Western nations, physicians increasingly care for patients from diverse cultural backgrounds. Differences in beliefs, values, and traditional health care practices are of profound relevance at the end of life. Culture shapes the expression and experience of dying and death as families prepare to lose a loved one. There is growing awareness that the care of the dying is deficient despite many advances in the field of medicine and multiple initiatives to improve this care. The burgeoning field of end-of-life care is receiving increased attention, and experts in the field are attempting to improve the care of the dying by clarifying priorities and establishing humane and respectful palliative care standards and practices. Simultaneously, Western nations are being transformed by rapidly changing demographics related to the growing numbers of immigrants from diverse backgrounds. Because culture provides the primary framework for understanding experience, it is critical to consider culture in relation to end-of-life care.
The heart of the problem is that health care providers, patients, and family members may have dissimilar beliefs about the meaning of illness or death, and they may not agree on which strategies are the most appropriate to alleviate pain and suffering or in planning for the end of life. Good palliative care may be compromised by disagreements between physicians and patients, by miscommunication, or by decisions or beliefs that are not understood or valued. Values that are ingrained in a physician may be alien to patients from different backgrounds. Because of the significant potential for misunderstanding, it is imperative that health care workers be cognizant of potential cultural differences and develop the skills necessary to identify such differences.
A way in which we often go wrong in medicine, and especially in palliative care, is that we see “cultural differences” as something rooted solely in the patient’s perspectives. As health care workers, we also represent a “culture” in which perspectives on end of life have a social and cultural history. It is imperative, therefore, to recognize that working with patients new to our society represents the interface of two cultures: theirs and ours. It is naive and unrealistic to believe that differences in patient perspectives can be taken into account without first understanding the genesis of our own perspectives. To this end, we must explore the historic and contemporary perspectives on end-of-life care. The terms Western and non-Western are used in this chapter. This distinction is not geographic, but rather it is philosophical and anthropologic. In the context of medicine, this distinction is grounded primarily in different beliefs about the primacy of the individual as well as the adherence to the biological views of health and illness.
Sociocultural Development of Palliative Care
An empirical and philosophical analysis of cultural differences in end-of-life care has started to identify significant differences in perspectives that are rooted in culture. However, this limited analysis has not yet had a significant influence on the fundamental assumptions of end-of-life care. When considering culture and end-of-life care, it is important to note that, despite the broadening of perspectives in the field of end-of-life care, moral agency and individual autonomy remain at the heart of contemporary attitudes and may cause cultural conflicts. Many health care workers who deal with people at the end of life recognize the importance of culture, but they argue that despite significant cultural differences, fundamental, inherent, universal ethical principles can and should to be applied across cultures, nations, and all forms of human boundaries as death approaches. The argument is founded in the belief that essential elements are embedded within the world’s apparently diverse moral systems, such as humanness (defined as compassion for the pain and suffering of others) and recognition of the equal worth and basic autonomy of every human being.
These concepts of equal worth and autonomy stem from the European Enlightenment of the 18th century. Moral agency and individual autonomy were strongly expressed by Immanuel Kant, were later refined into the political philosophy of liberalism expressed by John Stuart Mill, and, in turn, were developed and refined by many subsequent philosophers. These concepts are fundamentally Western and may be truly foreign to many patients.
If these concepts are applied as universal and are seen as our guiding light in the face of death, what then, for example, of Asian philosophical traditions grounded in Taoism, Confucianism, or Buddhism, in which moral perspective and direction are illuminated by interdependence rather than independence? Such cultures are perplexing to most Westerners because they do not contain references to autonomy or self. We often believe that having an “open mind” and “taking our cues from patients” will ameliorate cross-culture misunderstanding. We must first acknowledge, however, that our deepest beliefs related to death and dying are also shaped by culture.
Table 19-1 is developed from three paradigms from the social sciences: cultural context, as first described Edward Hall ; health locus of control, described by Rotter ; and the explanatory model of illness, described by Kleinman. This table represents trends in dealing with individual patients and families at the end of life.
| Contemporary Medical Perspectives | Non-Western Perspectives | Clinical Approach | |
|---|---|---|---|
| Beliefs about causation of death and dying | Death is biologically determined. Dying occurs when medicine can no longer stave off, treat, or reverse illness. Death most often occurs in hospitals, and the declaration of death is ultimately in the hands of medical personnel. | Death may be seen in a broader and seemingly less tangible manner. It may be viewed as being linked to religious, social, spiritual, and environmental determinants. Some cultural groups may perceive illness and death as separate entities. Declaration of death is also socially and culturally determined. | Anticipate nonmedical perspectives on death. Allow cultural rituals. Allow flexibility with time spent with the dying or deceased. Explore perceptions about the causes of the critical illness, its treatment, and death. |
| Social structures | Equality and independence are valued. Strong acceptance and value are given to autonomy. | Hierarchy is respected. Moral value is given to interdependence and family decision making. | Allow patients and families to make collective decisions (in the absence of coercion). |
| Communication about dying with patients and others | Information should be explicitly communicated. Clinicians have a moral obligation to truth telling because the patient has a right to know and must make autonomous decisions. Information is best communicated overtly. | People have a moral duty to protect loved ones from negativity. Cues are taken from social context. Frank communication about death is often unacceptable. Truth telling is highly problematic. | Ask the patient how much medical information he or she wishes. Ask how that information should be communicated. |
| Perception of a religiously/culturally meaningful death | Individual choice is valued. There is no direct association to medicine. These attitudes can be an impediment to the acceptance of the futility of further treatment. | Religion/culture norms may be the most critical aspect of death. These values greatly shape the bereavement process. | Allow rituals and flexibility with the number and timing of visitors. Accept nonmedical perspectives. |
| Perception of negotiating death (levels of negotiating treatment) | Patients are largely responsible for defining the “kind of death” they wish. | Suffering and death are largely a matter of fate and may hold profound spiritual meaning. | A trial of therapy allows patient outcomes to be determined more by “fate.” |
| Timing of death | The timing and circumstances of death can and ought to be controlled as much as possible to respect a patient’s autonomous choices. | The timing and circumstances of death and dying are preordained and a matter of fate. | Allow as natural a process as possible. If the patient is on life support, withdraw it gradually. |
| Nonverbal communication | Direct communication, even about difficult matters, is the most ethical approach. | Consider body language, and respect silences and rituals. | Listen more than speak. Consider body language. Allow and respect silences; consider their meaning. |
The following common clinical situation illustrates some of these conceptual differences in perspective.
A patient who is in a cognitively incompetent state is brought into an intensive care unit (ICU). When the ICU team meets with the patient’s family, they focus first on biomedical explanations of illness and the potential for brain death. They then ask whether the patient expressed any personal wishes about treatment before becoming incompetent and thus encourage an open and direct conversation about the severity of the situation and the potential for death. By exploring the patient’s perspectives and values with the family, the team hopes to formulate the best plan for the medical care of the patient.
However, the focus on individual rights and choices, the direct and blunt verbal communication about such a personal and difficult situation, the introduction of the element of choice, and the focus on a purely biomedical explanation of illness and death may be so confusing for this family of non-Western origin that the result is a complete breakdown in communication.
Inherent in this relatively standard approach is a belief in the Western definition of illness and death, a belief that the timing and circumstances of dying can and should be controlled. At the heart of each of these paradigms is the fundamental belief in the inherent value of respect for autonomy, even if the patient and the family are unaware of that concept.
Elements That Can Limit Cultural Understanding
Marginalizing Ethnographic and Psychosocial Information
Many medical approaches and bioethical models rely on comparative cases and examination of competing principles. Although these methods may be useful in defining some ethical issue, to understand end-of-life dilemmas fully, we must examine the social and cultural context within which the situation is embedded. Medical perspectives or comparative cases alone tend to marginalize many relevant factors such as culture or the personal and social meaning of a situation. Thus, the common effort to render end-of-life analyses as objective, rational, and unbiased by defining “value-neutral” concepts such as futility risks making end-of-life decisions socially and culturally neutral. Concepts such as futility and the lived experience of patients and families are separated by a substantial distance. Health care workers and medical literature often describe social and cultural factors as external “constraints” and frequently use the term cultural barrier, usually with the intent to analyze and clarify. However, the word barrier implies that culture blocks access to the resolution of the ethical issue, thus implying something universal on the other side of this barrier. Is there?
Secular Focus
Despite the significant Judeo-Christian contributions to end-of-life care and although many health care workers are aware of the profoundly religious and spiritual beliefs and contributions to end-of-life perspectives, health care in general continues to adhere to a largely secular perspective. This is understandable because a secular approach in medicine is a practical, political, and moral response that seeks to apply a unitary approach to the demands of complex and diverse cultures. Many would also endorse the idea that palliative care philosophy is emerging as a secular alternative to religious perspectives and is better able to serve a pluralistic, morally diverse society. However, by doing this we often isolate cultural issues from their spiritual and social context to achieve an institutionally sanctioned method of avoiding potential conflict. Unfortunately, our efforts to examine issues from a nonspiritual or nonreligious perspective make our approach limited, incomplete, and sometimes devoid of meaning and difficult to understand for many patients and families who are new to Western health care.
Focus on Individual Autonomy
Although challenges to the principle of autonomy are becoming increasingly apparent in medicine in general and in end-of-life care in particular, this awareness has not deeply affected standard medical practice. For example, much of the contemporary discourse in medical ethics equates autonomy with personhood, as though autonomy exists universally for all people independently of cultural perspectives. The extreme opposite of autonomy would be experienced by people who live in remote tribal societies where the concept of the individual is virtually nonexistent and holds little social relevance. Although we do not have people from remote tribal societies living in Western industrialized nations, this difference in perceptions of the self in relation to others illustrates the power and influence of culture. Despite this, the concept of autonomy remains the intellectual and moral foundation of Western medicine, and it is a direct manifestation of the Western concept of individualism: a belief in the importance, uniqueness, dignity, and sovereignty of each person and the sanctity of each individual life. According to this belief, every person is entitled to individual rights such as autonomy of self, self-determination, and privacy. For most cultures, this focus on individuality neglects the vital role of personal interconnectedness and the social and moral meaning of these interrelationships.
Truth Telling, Negative Focus
Generally, Western medicine (and, in turn, end-of-life care) has responded to the cultural trends of placing a high value on truth telling. Yet in the presence of serious illness, many cultures believe that giving negative information may induce negative outcomes. This belief reflects the considerable cultural differences concerning the interaction between mind and body. Some cultures are strongly protective of the critically ill and believe that ill loved ones require the same supervision and protection as well-loved children. Western medicine derives the physician’s obligation to communicate the truth to patients from the rarely questioned belief in the patient’s “right to know,” which, when considered as unconditional, requires that patients must deal with the truth overtly and rationally. The belief is that patients will ultimately be better off, and this perspective is particularly powerful in oncology. Sometimes we meet the patient’s refusal to accept the truth with impatience and believe they are in denial, a state that is understandable but generally considered unacceptable. From a Western perspective, we usually agree quickly about what the truth is as we anticipate outcomes based solely on medical perspectives, yet this view may mystify people of other cultural perspectives.
Attitudes toward truth telling are largely determined by culture. A qualitative study showed that Chinese seniors did not see truth telling as a moral absolute but instead believed that in many cases truth telling could produce more harm than good and should be dealt with in a cautious way that involved the family more than the patient. Another study that examined the attitudes of 200 seniors from four ethnic groups (African American, Korean American, Mexican American, and European American) found that Korean Americans and Mexican Americans were significantly less likely than European Americans and African Americans to believe that patients should be told about a diagnosis of metastatic cancer. A study of American Navajo perspectives concluded that the Navajo culture views medical information as harmful. In Taiwan, neither Western-oriented nor traditional Chinese doctors give information related to diagnosis and prognosis to patients who are facing life-threatening illness; instead, this information is given to family members, who, in turn, are expected to inform and support the patient. These findings have been supported by further studies involving Asian populations. Neither patients nor physicians view truth telling as an ethical issue. In the West, however, this practice would be considered a direct violation of the principle of autonomy.
Different Definitions of Death
Although many of us accept the standard medical determinations of death, there can be profound cultural variation in this area. The following example illustrates this variation.
In Western health care, organ donation from brain-dead patients may be seen as something positive and without a great deal of moral ambiguity. This is not the case from some non-Western perspectives. Japanese views of brain death and organ transplantation clearly illustrate such differences. One study, for example, suggested that in Japanese society, Shinto and Buddhism have strongly supported “natural” processes and approaches to dying. According to Buddhist belief, aging, illness, and death are inevitable once a person has entered the cycle of life. From a traditional Japanese perspective, a human being is the integration of body, mind, and spirit. After death, a person remains an integrated whole. The metaphorical center of the body, kokoro , has traditionally been located in the chest. Therefore, removal of an organ from a brain-dead human, especially from the chest, may be perceived as disturbing this integrated unit. The Japanese find a fragment of the deceased’s mind and spirit in every part of a deceased person’s body. It follows that the Japanese believe a dead person goes to the next world as a soul. Similar to a living person, this soul has its own body, senses, and feelings. The dead body must remain whole because if some parts are missing, the soul becomes unhappy in the next world. Such latent yet formative cultural views are not specific to the Japanese. For example, although not homogeneous in their views, many North American aboriginal people are profoundly uncomfortable with organ donation. In many non-Western cultures, death is viewed as a social event rather than a scientific phenomenon.
What are the cultural, historical, philosophical, and religious influences that have made certain ideas about death acceptable in the West? Perhaps it is because in the West, human beings have often been perceived as the blending of body and soul. Christianity has shaped the West just as Buddhism, Shinto, and Confucianism have shaped Japan. In Christianity, people are expected to respect the body after death because it was an essential part of the person during life; however, a body without a soul is no longer considered a person. With regard to organ procurement, many Christians perceive the donation of one’s organs as an act of love and generosity. The spiritual value of nonreciprocal giving is central to Christian belief. This, in part, may have contributed to the widespread social acceptance of organ donation. In general terms, Western medicine and, in turn, end-of-life care, have accepted brain death as death and have embraced transplantation. Clearly, there are profound cultural differences in perceptions of validity of brain death and the moral value of organ transplantation; this cultural difference cannot be addressed by the often-stated need for better education of new immigrants.
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