Cancer is a traumatic diagnosis for the patient and the family, and creates anticipatory grief and fear. The journey through the cancer experience is difficult and fraught with physical, emotional, and spiritual challenges for all involved. A large body of literature exists in Europe and North America on palliative care and end-of-life care to address these 2 fundamental emotional responses to cancer and the symptoms that accompany the disease and the treatments, but such literature is sparse in other parts of the world. Translating the findings from the West however, may be problematic in non-Western, and particularly, non-Christian cultures, for many of the assumptions that underlie the approach in the West to suffering and death are culturally based in the values and beliefs of western European society.
The goals of palliative care are to decrease suffering, to improve health outcomes within the constraints of the disease, and to increase the quality of life of the patient and family until death.1,2 These goals appear to be universally desired, but little is known about the acceptability of the means to achieve these ends among diverse cultural groups. Thus, the 4 objectives of this chapter are to provide a means to explore how the clinical delivery of palliative care may differ across cultures. First, a definition of culture will be provided so that the context for the subsequent discussion is framed; second, this chapter will provide a description of how culture impacts the cancer experience; third, a description of how culture fundamentally affects communication to relieve suffering and improve quality of life for patients and families is outlined; and fourth, a basis from which to translate Western assumptions about palliative care for more effective application across cultures is offered.
Culture is the core, fundamental, dynamic, responsive, adaptive, and relatively coherent organizing system of life designed to (1) ensure the survival and well-being of its members, and (2) provide common ways to find meaning and purpose throughout life, and to communicate caring. This system is composed of beliefs, values, and lifestyles to successfully adapt within a biotic and abiotic geographic niche using available technology and economic resources. For example, different tools are used by every cultural group to manipulate the environment for available foods and shelter, and to find meaningful, structured modes of social interactions interpersonally and institutionally to support the well-being of its members. Importantly, culture provides ways to make sense of life events, especially at times of trial, such as when a person develops cancer, through its world view or construction of reality.
This world view makes sickness and death more comprehensible and manageable through specific beliefs, values, and rituals that provide the answer to “why” and also provides social and personal means to manage the crisis by shaping appropriate emotional reactions and behavioral responses to the disease and norms regarding how one’s social network communicates caring, provides safety, and social support. Thus, diet, marriage rules, social roles, and means of livelihood that influence gene expression, health status, and disease prevalence are largely culturally prescribed and proscribed.3Table 1 lists the 7 nested components that determine the structure and content of culture.4
Culture, then, is the multi-level, multi-dimensional, dynamic, adaptive, and integrative biopsychosocial ecological system in which a population of people exists, and not merely a collection of beliefs and values interchangeable on the same template as that of the culture of the northern European-American dominant culture. As these factors vary and develop dynamically owing to geographic, social, and political circumstances, cultures evolve differently. Efforts to apply the concept of culture accurately and usefully in medical practice require an assessment at each of the model's levels and across time, providing a composite lived world of the patient and family.
Ishii, the last Yaqhi Indian in California, USA, stated:
“Ethnic identity is found in the ‘cup of custom’ passed on by one’s parents from which one drinks the meaning of existence. Once the cup is broken, one can no longer taste life.”5
Thus, although the fear of cancer is universally associated with dying in pain, forgotten, alone, shamed, and abandoned, its meaning and acceptable ways of coping differ, and one’s ethnic identity and cultural guidelines are fundamental to support an individual and his/her social network through the cancer journey. A diagnosis of cancer usually evokes a sense of loss of control, chaos, and grief at the potential loss of both self and others. Thus patients need an anchor to provide a sense of security and a roadmap to safety. The implications of their illness, whether the diagnosis is given or not, is to maintain their sense of integrity, to be respected as an individual, and to be understood as a whole and valued person, and to remain an integral part of their social network.6 They also want to know their prognosis, and how the disease will affect their lives and their family’s lives. As Ishi noted, one’s culture provides the meaning to life and a protocol of emotional expression for these adversities. Without understanding the patient and family’s culture, a clinician would be sorely challenged to provide meaningful support to their patient and the family to traverse the cancer experience with equanimity and minimize suffering.
As clinicians, how do we enable the individual to die with equanimity? The optimal realization facing death is “Life is transient-but I am not replaceable.”7,8 Existentially, it appears that each individual desires a sense that his/her life has made a difference-that he/she leave a legacy for his/her loved ones.
Providing culturally competent care, however, is not just a checklist of cultural traits for each culture, because in our multi-cultural, globalized world, no clear demarcations usually exist between most cultures that live in juxtaposition with each other. Such proximity often results, knowingly and unknowingly, in a gradual melding of foods, beliefs, and values. Thus, as clinicians, we need to maintain the focus of our efforts on both healing and curing together for health within a mosaic of cultural backgrounds of both patients and clinicians. But what is health? Patients with end stage cancer defined it as the ability to work toward life objectives and lead full and fulfilling lives as an essential part of their social network. The physical reality of their condition did not enter into their definition. They could be healthy with their disease as long as they could fulfill their social role responsibilities.6 Our efforts should integrate both these physical and social goals.
HOW CULTURE IMPACTS CANCER
Culture affects the entire way in which cancer is framed in meaning and response. Awareness of these potential variations would better enable clinicians to relieve unnecessary suffering and improve both the patient’s and the family’s quality of life. For example, culture modifies (1) Concepts of health and death at the physical, spiritual, and metaphysical levels; (2) The experience and expression of pain9–13 such as verbally and physically expressive or stoic and whether pain is viewed as punishment or a test of faith; (3) Drug metabolism-such as fast/slow metabolizers owing to genetic polymorphisms individually as well as by population groups; (4) Emotional responses to the diagnosis and course through cancer. Universal basic emotions exist, but each is culturally filtered and expressed in the face of suffering, such as anger, resignation, expressiveness, or stoicism; (5) Family and individual decision-making styles vary according to their concepts of autonomy, who is expected to make the treatment decisions-the patient himself or herself, the head of the family, or the clan/village elders or chief-with or for the patient; (6) Concepts of dependency and provision of social support vary in how dependency is acceptably expressed and supported and how social support is provided: who, what, and when; (7) The etiquette of communication patterns also vary; and finally (8) Attitudes toward truth telling differ regarding definitions of truth, the meaning of cancer, and the type and amount of information also differs according to the stage of the disease. Notably, each of these 8 categories will vary by age, sex, and social roles within each family and community.
CANCER IS A FAMILY AFFAIR
Western biomedical care is based upon fundamental beliefs and values of individual autonomy and self-determination. This basic value is expressed in our legal system through the assurance and support of patient rights, informed consent, and individual decision-making throughout the course of treatment. The role of the family in this process is often missing. In every culture, however, including Western culture, the family is the smallest unit of analysis for the fulfillment of human need. In the West, we, legally and structurally, place the family lower in the focus of care than in many sociocentric cultures, where family welfare is often primary, and individual needs are suppressed. Inevitably, tension exists in negotiating to find a balance between personal needs versus the needs of others significant in the patient’s social network. The informational and care needs of the family/primary caretaker and surrogate decision-makers are less emphasized in the literature.14 Moreover, the assumptions made in the dominant US culture of who constitutes family are often too narrow to include other constructions of family. In the United States, the biologic natal family and the legal spouse is the assumed definition. In many other cultures ritual or fictive kin are fundamental to the definition. Who then, is involved in decision-making? How is this burden shared? These questions can only be answered by the patient and his/her family and should be explored to facilitate communication between the clinicians, the patient, and his/her social support network.
CULTURAL AND PERSONAL MEANING OF CANCER
Cancer also carries additional metaphoric meanings beyond a death sentence, such as punishment, tests of faith, or contamination of the patient as well as the family depending on one’s culture and/or religion. The patient and family must bear the burden of the disease itself as well as the social stigma of cancer. All cultures provide rituals that require attention to appease spirits or ancestors, and enable the dying to leave legacies that will honor their memory, and often, more importantly, the family name. Acknowledging and supporting these rituals when desired, may enable the patient and family to feel rooted and safe along the inevitable journey.
Societies also differ in how they differentiate cultural groups. Some focus on religious differences and the lifeways prescribed in their scriptures. Others, like the United States, identify cultural differences by the proxies of racial/ethnic groups. The Office of Management and Budget Directive 1515 codified our categories, but acknowledged that they are social-political categories for no scientific evidence exists for “race.”16 However, the application of these categories on groups of people by skin color eviscerate the meaning of culture by ignoring what it actually is and equating it with culture. The racial categories in United States are: non-Hispanic white, American Indian/Alaska Native, Asian American, Pacific Islander, African American/Black, and one ethnic group: Hispanic (ethnicity in 2000 Census, yes/no). One example that indicates the inadequacy of these aggregated categories is to disaggregate the diverse cultures within the non-Hispanic white category to see the variation that is conceived as a single homogeneous group. The category non-Hispanic white includes such nations as Scotland, Ireland, Italy, Greece, Finland, Spain, Iraq, Israel, Egypt, Iran, and Turkey. Use of such aggregated groups in research or as guides for practice are misleading at best, and likely compromise the validity and utility of the findings and the effectiveness of interventions.
Despite the U.S. Office of Management and Budget’s recognition that these categories are not scientific and use them, instead, as socio-political categories, medicine continues to use them as though they are biologically valid and adequate proxies for cultural beliefs, values, and practices. The result at best is stereotyping and compromises our ability to provide quality patient-centered care.
With these caveats in mind, caution must be used in interpreting racial/ethnic improvement in care in the US literature, and trying to apply the findings in other countries. For example, in 2009, Smith et al17 published a study of the enrollment of elderly Medicare patients in hospice by ethnicity that showed relatively equal distribution of enrollment by each of the 4 main racial/ethnic groups in the United States (37% non-Hispanic Black, 42% non-Hispanic white, 37.7% Hispanic, and 32.2% Asian). These unadjusted numbers, indicate a vast improvement over the past 10 years, when over 85% of hospice patients were non-Hispanic white. However, this study did not indicate the potential difference in satisfaction with care, the quality of care by group, or for time of referral before death. In a study in California in 2009,18 the quality of patient care at the end of life for ethnic groups of color continue to lag behind that of non-Hispanic white patients. If the goal of palliative care and hospice care is quality care, each patient must be treated uniquely and not as a member of a homogenous group,19 and it appears we have yet to achieve this goal.
To move toward our goal for quality care for all, clinicians must recognize each patient’s individual history, generation, and family context in a holistic fashion20 that is culturally based, not stereotyped, and not using the preconceived means or outcomes from another culture. For example, an African dashiki, Japanese kimono, or Muslim burqah may serve the purpose of covering the body for modesty or warmth, but the meaning and context of the clothing, the appropriateness of the age, and place of wear, are all culturally informed. Thus evidence-based models of palliative care or end-of-life care from one culture cannot be automatically “replicated” in another culture without a scientifically grounded assessment. Assuming that beliefs and values are interchangeably valid and relevant across cultures is naive and potentially harmful.
Patients of all cultures appear to have 3 universal needs in life: (1) a sense of safety and security, (2) a sense of integrity and meaningfulness of life, and (3) and a sense of belonging. The crux of one’s ability to get through the cancer experience is the realization that the reality of the condition cannot be changed, but the meaning with which it is inbued emanates from the individual and family and their cultural repertoire of their world view and life circumstances.21 To better understand the approach of the United States to palliative care is to understand the basic values that the US society uses to construct the social system to meet the 3 universal needs: independence, self-reliance, and autonomy and happiness. Yet most of the rest of the world value collectivism, interdependence, community, and continuity of the generations. The concept of interconnectedness and interdependence are much more prevalent and in conscious awareness in cultures other than the United States. Thus, practices around palliative care and end of life in the United States must be understood within this latter context of independence and autonomy. Almost all other cultures have values that communicate that individual life must be understood within the costs and benefits of group welfare, and also a basic premise, as in Buddhism, that all life is suffering, and we make our lives from that point onward. Life is a struggle and we do the best that we can, but accept that which we cannot change.
Kluckhohn and Strodbeck22 asserted that the world views of all cultures can be characterized with 5 dimensions and 3 typologies. Figure 1 shows the 5 categories as: innate human predisposition, man’s relation to nature, time dimension, valued personality type, and modality of relationships. For example, cultures can be broadly characterized for innate predispositions in 3 typologies: evil (mutable or immutable), neither good nor bad (mutable or immutable), and basically good (mutable or immutable), along the dimension of time as focused on the past, present, or future. The United States can be characterized along the dimensions on the far right. We believe humans are innately good, and mutable, that man rules over nature, we are future oriented and thus goal directed, and value personality type that is “doing” and not just “being,” and lastly, our modes of relationship are individualistic and not lineal or collateral. The values of our country emphasize these beliefs and values as do our healthcare delivery structure. This perspective on US society illuminates how and why the basic values of our society promote the forms of palliative care and end-of-life care that are represented in the literature. Other cultural groups will need to assess the similarities and differences between their cultures determine what will work and what may need to be modified or changed completely to fit in their setting and society. One tool to assist in this assessment is described below.
The emphases on full disclosure and truth telling and patient autonomy in the United States are expressions of the cultural values upon which our healthcare system is based. Truth telling appears to be based on the value that “…the truth shall make you free.” However, one source of this concept is John, Chapter 8, Verse 32 in the New Testament of the Bible. Yet US practitioners often do not stop to ponder if the clinical practice of always giving the diagnosis and prognosis since the late 1970s is offering truth or inflicting truth.23 Moreover, is the use of specific words to communicate the diagnosis and prognosis the only truth to be told and the only way in which to communicate truth? Only about 7 countries tell their patients the diagnosis, site, and prognosis of their cancer: United States, Finland, Canada, England, Australia, Germany, and the Netherlands. Many countries of the world provide little to no words of the actual diagnosis or site of the cancer or its prognosis, and 30% to 60% provide moderated information. Studies have shown that in countries in which the diagnosis is not given, 45% to 66% of patients know their diagnosis without being told.24 What this also shows, however, is that consistently large numbers of people die unaware of options for choices in the dying experience. The area of truth telling, nonetheless, is fraught with conflicting beliefs, values, and social mores of communication etiquette. Notably, only around 7% of communications of feelings and attitudes is verbal,25 thus there seems to be a great deal of leeway in what, how, and by whom, the truth be told.
The meaning of death and beliefs about the afterlife also inform how individuals, families, and societies approach death and how we, as clinicians, react and how we might prepare them for the journey. Is the soul immortal? Is there an afterlife? Do the dead have an active role in the lives of living as potential enemies who require propitiation or as potential guardians and supporters? How do we support the dying process to honor our dying throughout their care? Or are they relegated to a backroom, invisible to all except those most immediately affected? Knowledge about these beliefs and behaviors would help clinicians understand some of the fears and feeling of the dying and those left behind.
In death denying societies, like the United States, technology for healthcare may be overly prescribed to maintain life, even when little quality remains, and often beyond what the patient or his or her family might choose if given the choice.1 Most other cultures are more death accepting26 and live in coexistence with the realization of the inevitably of death. This attitude also impacts how a patient and his or her family may view death-also knowing what lies beyond.
One domain of quality of life that is too often ignored in life-threatening illnesses is the pervasive value patients and families put in the strength they derive from their spirituality.27 Yet, surveys in the United States note that over 80% of Americans feel that their spirituality is very important to them, and cancer patients have noted that their faith and spirituality is the primary strength they draw on to go through the cancer experience. The lack of recognition by the scientific community, however, is indicated by early quality of life studies that did not include spirituality as a fundamental domain. In fact, it was not until the mid-90s when this change was made to the major scales28 hence, in the United States, the fragmentation of not addressing the individual and family holistically within their spiritual roots is an irrational division that undermines the quality of care and support that can be provided to relieve existential as well as physical suffering.
Thus, hospitalization in acute care settings in the United States or systems modeled on Western healthcare, often creates barriers to the incorporation of needed rituals that assert emotional and physician ties to the suffering and dying, inclusion of extended family networks to ensure continuity of the self and the family, and the expression of various modes of grief expression.
FORM AND FUNCTION
One tool to aid this assessment is that of Form and Function, which is taken from anthropology and is used to compare practices and tools across cultures. For example, every culture developed an object or tool to carry water, such as a clay or woven reed bowl, gourd, or wood bucket. The function was the same, to carry water, but the form it took was dependent upon what was available in the environment and usually decorated or shaped with cultural symbols and individual style.29 Like water, cancer is a disease that must be borne and managed to maintain meaning in life despite death. Cultures have developed the means to deal with such adversity. Some strategies, however, owing to time and changing technology and sometimes geographic migration of populations, may be more adaptive in certain setting than others. The Form and Function model (Fig. 2) demonstrates that the function or goal of an intervention may be similar, but the form it takes to achieve that goal may vary. If in the United States, the goal is autonomy of decision-making the practitioner or researcher can see that this is not a goal that may be compatible with his or her cultural beliefs and practices at this time, and develop alternative strategies to provide information and support the patient and family.
Using the Form and Function tool enables researchers and practitioners to more scientifically assess cultural differences and when such differences may impact coping with the course of cancer and its treatment and symptom management, for it will inform the meaning, metaphors, and communication styles and etiquette required to provide quality care. Figure 2 indicates how the cells of the grid can be filled in to inform practitioners how particular cultures may affect perceptions of cancer.
Steps to improve communication cross-culturally:
- Develop a template of Form and Function (Fig. 2) for the major groups within one’s practice
- Learn differences in meaning of suffering-retribution, trial of faith, meaning of death, and the role of healthcare practitioners
- Take time to explain in clearer terms-may need to be tangential, but answer their questions-family conferences
- Take time to build trust-culturally informed clinical practice is essential for clinicians and care settings to be perceived as trustworthy, credible, approachable, acceptable, and culturally competent. This trust is the key to enable the patient, family, and clinicians to negotiate mutually acceptable goals for care with their clinicians.
- Learn to actively listen and truly hear what the patient and family say and ask below the words they use. This requires listening with the ears for the words, eyes for the nonverbal communication, and with the undivided heart as noted in Figure 3 in the Japanese and Chinese character for “listen.”
- Address discontinuity of care-changing shifts and rotations and sites of care
- Acknowledge the potential role of faith in their decision-making and how this can be supported.
- Be sincere. Maintain integrity of the patient and their loved ones as well as your own as the clinician in the eyes of the patient and their significant others.30
Observing these 8 strategies would increase the likelihood that clinicians could provide acceptable, relevant, appropriate, and effective holistic quality palliative care throughout the cancer experience to diverse patient populations.
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