APPENDIX D
CULTURAL DIMENSIONS OF CARE AT LIFE’S END FOR CHILDREN AND THEIR FAMILIES

Barbara A. Koenig, Ph.D.*and Elizabeth (Betty) Davies, Ph.D.

“Every medical encounter involves the meeting of multiple cultures.”

Linda Barnes, et al., 2000 [1]

“Treatment may be given more as a ritual commitment to the value of fighting death than out of rational expectation that it will help the patients.”

Talcott Parsons, Renee Fox, and Victor Lidz, 1972 [2]

INTRODUCTION

The Relevance of Cultural Difference at Life’s End

End-of-life care and palliative care for children and their families encompass key domains of life that are inevitably shaped by cultural context. Understandings of the boundary between life and death and the rituals that give meaning to this key transition vary widely. Is it critical to fight death or should it be accepted as part of life, beyond the control of medicine? What is the meaning and significance of the loss of an infant or child? How do

*  

Center for Biomedical Ethics, Stanford University.

†  

School of Nursing, University of California, San Francisco.



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APPENDIX D CULTURAL DIMENSIONS OF CARE AT LIFE’S END FOR CHILDREN AND THEIR FAMILIES Barbara A. Koenig, Ph.D.*and Elizabeth (Betty) Davies, Ph.D.† “Every medical encounter involves the meeting of multiple cultures.” Linda Barnes, et al., 2000 [1] “Treatment may be given more as a ritual commitment to the value of fighting death than out of rational expectation that it will help the patients.” Talcott Parsons, Renee Fox, and Victor Lidz, 1972 [2] INTRODUCTION The Relevance of Cultural Difference at Life’s End End-of-life care and palliative care for children and their families encompass key domains of life that are inevitably shaped by cultural context. Understandings of the boundary between life and death and the rituals that give meaning to this key transition vary widely. Is it critical to fight death or should it be accepted as part of life, beyond the control of medicine? What is the meaning and significance of the loss of an infant or child? How do *   Center for Biomedical Ethics, Stanford University. †   School of Nursing, University of California, San Francisco.

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parents, the family, and the broader community react to the crisis of life-threatening illness and experience a child’s loss? Finally, how should the American health care system incorporate attention to cultural difference in efforts to reform and improve care for children living with life-threatening and terminal illness and their families? To answer these questions we provide an overview of what is known about the relevance of cultural difference in health care for children and families, specifically focused on end-of-life care and bereavement. When cultural difference is considered, we generally think of differences among families from varied ethnic backgrounds. “Ethnocultural” background influences all aspects of health care, nowhere more profoundly than when death is near. Even patients and families who appear well integrated into U.S. society may draw heavily on the resources of cultural background (particularly spirituality) when experiencing and responding to death. When cultural gaps between families and health care providers are profound—accentuated by language barriers and varied experience shaped by social class—negotiating the difficult transitions on the path to a child’s death, always a daunting challenge, becomes even more difficult. 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 a child’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 health care providers do not share fundamental assumptions and goals the challenges are daunting. Even with excellent and open communication—the foremost goal of culturally appropriate care— barriers remain. Differences in social class and religious background may further accentuate the profound challenge pediatric palliative care presents to the health care system. Throughout the latter half of the twentieth century and continuing today, the death of a child has been considered a tragedy of the first order in the United States. For the family, few experiences are as difficult to navigate and to survive emotionally, physically, and economically intact. Significant health care resources have been devoted to forestalling premature death in children and newborns, often with great success, such as in the treatment of childhood cancers. The high cost of intensive care for premature newborns may be lamented, but services are rarely questioned or denied. Some might argue that this devotion to forestalling death in childhood is itself a deeply rooted cultural feature of U.S. society, expressed vividly in the priorities of the political and medical care systems. The question of whether the loss of a child is experienced in a funda-

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mentally different way in societies with different values or significantly higher childhood death rates is of more than academic interest [3]. Clearly if a family bears eight children and only expects two to survive to adulthood, the experience of death will not mirror that of a United States middle class family whose only child dies, although feelings of grief and loss will be as deeply felt, albeit differently expressed. In resource-poor environments it may not be possible to devote significant means—emotional or financial— to stave off a child’s death, even one that is theoretically preventable. One might argue that the U.S. focus on child death as a tragedy is in some ways a feature of affluence. Unlike many countries today and unlike most periods of human history, we have the privilege to focus on extending the lives of children with chronic, life-threatening conditions.1 Significantly, immigrants to the United States may have markedly different expectations about child death shaped by the experience of severe poverty, health care systems marked by inequality, and war or other catastrophes. Thus, a key cultural feature of our efforts to improve the care of dying children in the United States is a profound yet generally unspoken background assumption: we believe that death in childhood is “unnatural” and unthinkable, that morally it should or ought to be controllable. Because death in childhood is an unspeakable tragedy, almost an obscenity, we devote nearly unlimited resources to preventing it. A significant consequence of this cultural stance is that the death of infants and children in the United States health care system takes place only after all aggressive efforts to stave off death have failed. Often, death follows an explicit negotiation about the exact moment, location, and mode of dying. Estimates are that a high percentage of deaths in intensive care units (ICUs) (some studies report close to three-quarters) occur following an explicit negotiation or decision-making process [4, 5]. This makes good communication—the core element of decision making—a high priority. In an increasingly diverse society, the goal of excellent communication about palliative care realities, which is difficult under the best of circumstances, becomes a serious obstacle to care. When the Institute of Medicine (IOM) conducted its first comprehensive assessment of care of the dying in the United States [6], little was 1   One of the authors first learned this lesson when she received a letter from a nurse in South Africa following the publication of an early article on the care of dying children in the U.S. The writer stated that Koenig’s description of the ethical conflicts experienced by nurses caring for dying children who received aggressive therapy in spite of little hope of survival was of little relevance to her, because most of the dying children she cared for were killed by preventable infectious diseases, such as measles. The issues of economic privilege and social position were highlighted again for the authors during final editing of this manuscript. A front page story in the New York Times described a father in war-ravaged Afghanistan who had sold two of his sons to aid the survival of the rest of the family.

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known about the impact of increasing cultural diversity on the provision of palliative care services or end-of-life care generally. In 1993, Koenig conducted a review published in the IOM report that described the paucity of research findings to date; the review focused on the importance of unexamined Western assumptions undergirding bioethics practices guiding end-of-life care for adults and emphasized the importance of encouraging a sophisticated understanding of the nature of cultural difference, in order to avoid the harmful effects of stereotyping patients [7]. Since that first report a growing literature documenting the role of cultural factors in end-of-life (EOL) care for adult patients has developed (see a recent review by Kagawa-Singer and Blackhall [8]). Although still incomplete, the research to date reveals the dimensions of cultural difference most salient in EOL care, including the focus on autonomous decision making by individual patients, varying preferences about the intensity of treatment, differential hospice use, disparities in access to pain medications, and concerns about trust in the health care system. By contrast, very little research on cultural issues specific to infants and children has been published. A Firm Research Base Is Lacking in Pediatrics An extensive review of the health care, psychological, and anthropological literature conducted by one of the authors (Medline 1990–2001, PsycInfo, CINAHL, and Anthropological Literature) using a variety of keywords in numerous combinations (including but not limited to children, pediatric, culture, ethnic, death, dying, palliative, hospice, illness) documents the lack of published research in this area. We found approximately 20 articles published over the last 10 years that report empirical findings related to cultural issues in families where a child is seriously ill or dying or has already died. Some of those studies included a discussion of cultural issues in palliative care outside the United States. Although of theoretical interest, studies of other societies—when the cultural background of the patient and family match that of the health care team in a homogeneous society—are less germane to the situation of plural societies like the United States. We conclude that a firm research base on cultural dimensions of end-of-life care for children and families is lacking. In particular, how culture affects negotiation about treatment decisions and palliative care in the American context is little studied. As with pediatric palliative care more generally, and as documented in the IOM report for which this background paper was prepared [9], the research base supporting practice is limited. However, because children are inevitably part of families, much that has been learned about the cultural dimensions of EOL care for adults may be directly relevant to children, although research specific to the unique needs of children is of course

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necessary. Whether the person dying is a newborn or a revered grandparent, serious illness affects the family as a whole, and decision making about end-of-life care is often a shared responsibility, even for adolescent and adult patients. Furthermore, structural and other constraints on the provision of palliative and EOL care to certain population groups are likely to be shared across age groups, affecting both children and adults. Differences in utilization of hospice services among U.S. populations, for example, are well known. African-Americans—12.3 percent of the U.S. population—comprise only 8 percent of hospice patients [10]. As a group, minority patients account for 25 percent of the population but only 17 percent of those receiving hospice care [11]. Although the exact reasons for these disparities are unknown, it has been suggested that hospice care may present barriers to underserved populations, those without the economic resources to shoulder the burden of family care giving, or those who lack a stable home for the provision of home-based services. Subtler barriers may be created by the hospice philosophy of open acceptance of and discussion of death. Additional research to investigate this possibility is required. The Significance of Population Diversity and Profound Health Disparities There are two primary reasons for the current attention to the issue of ethnocultural diversity in health care. One is primarily political—the recognition and growing acceptance of the United States as a multicultural society marked by inequality; the other is demographic—the increasing diversity of the population. The task of providing culturally appropriate healthcare services is a daunting one. As widespread disparities in U.S. morbidity and mortality rates are documented and links to varied access to health care services are confirmed, attention to “difference” takes on added significance [12]. Eliminating health disparities across the U.S. population is an established national priority [13]. Recently, as one effort to reduce health disparities, the Office of Minority Health of the U.S. Department of Health and Human Services (DHHS) released national standards for “culturally and linguistically appropriate health services” [14]. It is not always clear, however, how these standards can be applied to improving EOL care for children and what barriers exist to their implementation. The existence of significant disparities in U.S. mortality rates, for example the continuing excess mortality of African-American males across the life-span [12, 15], complicates the goal of improving EOL care. Figures D.1, D.2, and D.3 compare the rates for leading causes of death in children for African-American males and European Americans at various ages. Differences in cause of death are striking, particularly for violent death and

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FIGURE D.1 Death rates for white and black males, ages 1 to 4 (1998). SOURCE: Table 8 in Murphy SL. Deaths: Final data for 1998. National Vital Statistics Reports, July 24, 2000, 48(11):1–105. FIGURE D.2 Death rates for white and black males, ages 15 to 24 (1998) SOURCE: Table 8 in Murphy SL. Deaths: Final data for 1998. National Vital Statistics Reports, July 24, 2000, 48(11):1–105.

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FIGURE D.3 Death rates by selected causes of death for white and black males, ages 1 to 4, 5 to 14, and 15 to 24 (1998) SOURCE: Table 8 in Murphy SL. Deaths: Final data for 1998. National Vital Statistics Reports, July 24, 2000, 48(11):1–105. accidents. HIV/AIDS does not occur in the “top 10” list for European Americans, while it is included for African-American children from birth through their teens. Excess deaths from preventable causes change the underlying dynamics of care. Documented health disparities, especially those that reveal higher mortality rates in U.S. populations that have been subject to past racial discrimination, are directly relevant to efforts to improve end-of-life care in the United States, whether for children or adults. Recent studies that reveal differential access to curative services are particularly troubling, such as a lower rate of surgical referral for African-American adults with potentially curable (Stage I and II) lung tumors than for whites [16]. Findings documenting disparities in access to services are less clear-cut in pediatrics. One study found that black children and adolescents with end-stage renal disease were 12 percent less likely to be waitlisted for transplant than whites, even though all were Medicare-eligible [17]. The historical context of lack of access to health care services makes the explicit negotiation of death a particularly charged issue, one likely to be contested [11, 18, 19]. Even if differential access to care and varied treatment outcomes in children prove to be less extensive than those documented in adults, the existence of systematic black/white health disparities will continue to have an impact on the care of infants and children. The prior experience of parental decision makers with their own care, or with the care of other family members, will

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inevitably shape their interactions with care providers about a critically ill child. African-Americans may now be seeking treatment for their seriously ill child in a hospital that denied care to blacks within the memory of their parents and grandparents. The attention of physicians to palliative care needs is also affected by historical patterns of discrimination. Physicians practicing in communities lacking access to care may make life-saving technologies—rather than improving care for the dying—a top priority. Focus groups conducted with African-American physicians (including pediatricians), who often care for high numbers of minority patients, in four regions of the United States found that end-of-life care was simply not a priority [20]. The “Initiative to Improve Palliative Care for African-Americans” is a national effort to focus attention on care near the end of life [21]. Strategies targeted to the needs of particular communities are critical. The diversity of the U.S. population has increased markedly over the past decades. Although most pronounced in states like California and New York, the U.S. population as a whole is more diverse today than at any point in the twentieth century. The 2000 census reveals that 20 percent of the U.S. population, or 56 million people, are immigrants or first-generation residents. Projections suggest that some areas of the U.S. will have no “majority” population by the middle of the twenty-first century; people of color will triple by the year 2050. Due to higher birth rates in some communities and greater immigration rates among the young, the diversity in the U.S. population is greater in the youngest age groups. This means that when one considers the arena of end-of-life care, there is far greater diversity in pediatric than in adult practice. Overall, the majority of U.S. deaths occur among individuals greater than 65 years of age, in the eight, ninth, and increasingly the tenth decade of life. Thus, the typical adult hospice or hospital-based palliative care service will have a population of patients that is considerably “whiter” than a clinic focusing on children; attention to cultural diversity is more acutely needed in pediatrics than in the adult practice arena. Figures D.4 through D.7 compare the U.S. population diversity by age group in three states and for the U.S. as a whole (Figure D.7). In California (Figure D.4), only 30 percent of the population under age 10 are identified as white; in New York (Figure D.5), the figure is 50 percent; and in Ohio (Figure D.6), 80 percent. The increased attention to diversity is also a strong political and moral commitment, not simply a response to “the numbers.” During the early twentieth century, the expectation was that new immigrants would simply melt into the U.S. mainstream. Accepting the health care practices of the dominant society was an explicit element in the “acculturation” process. The fact that certain populations, specifically those set apart by the practices of racism, were excluded from the melting pot was little noticed. Populations do not “melt” with equal rapidity.

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FIGURE D.4 Breakdown of diversity at young versus old ages in California (2000) SOURCE: United States Census Bureau. FIGURE D.5 Breakdown of diversity at young versus old ages in New York state (2000) SOURCE: United States Census Bureau

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FIGURE D.6 Breakdown of diversity at young versus old ages in Ohio (2000) SOURCE: United States Census Bureau. FIGURE D.7 Breakdown of diversity for various age groups in the United States (2000) SOURCE: United States Census Bureau.

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Likewise the idea of “acculturation” has proven to be a poor model of the complex process of accommodation and adaptation occurring in the United States. In a truly multicultural society, all parties in the exchange are transformed—it is not simply a matter of immigrants gradually becoming Americanized while stewing in the “melting pot.” In health care for seriously ill children, it is not helpful to consider the absolute level of acculturation of any specific individual or family. Inevitably, families will be varied in their knowledge of and integration into “mainstream” health care practices. A single family may be “multicultural,” including grandparents who are very much involved in caring for a child with a life-limiting condition but who are unable to speak English and lack familiarity with the United States’ health care system. In the same family the child and his or her siblings may have been born and educated in the United States, leaving the parents caught in between the expectations of their American-born children and their desire to meet the demands of grandparents. Members of the same family may draw on the resources of culture differently; they may embrace different religious faiths or engage selectively in cultural practices. Increased population diversity is a feature of health care professionals and health care workers in general, not just of patients. Many nursing assistants and home health aids, as well as physicians, nurses, and social workers, are themselves immigrants or self-identify as belonging to a particular ethnocultural group. The varied cultural backgrounds of care providers may influence their expectations about what is appropriate care for seriously ill children. Cultural expectations of nursing home personnel caring for the elderly have been show to be of concern when decisions are made to withhold or withdraw treatment, particularly tube feeding, which may have significant symbolic value [22]. Similar concerns may exist in pediatric long-term care settings if care providers come predominantly from cultural or religious backgrounds where feeding is considered obligatory, regardless of benefit to the patient or the desires of the child or family. Potential conflict in negotiations about appropriate end-of-life care comes to the fore in situations of diversity. DEFINING THE KEY DIMENSIONS OF CULTURAL DIFFERENCE: INTERSECTIONS OF “RACE,” ETHNICITY, SOCIAL CLASS, AND IMMIGRATION STATUS What Differences Make a Difference? Considerable research documents the relevance of ethnocultural and religious differences in the experience of death and dying and in clinical approaches to end-of-life care [23, 24]. However, health research in general does a poor job of making clear analytic distinctions among the key ele-

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organizations recommend that family interpreters not be used. Since it is unlikely that family members will ever be completely replaced by professional interpreters, it may be more realistic to suggest that health care providers understand the potential dilemmas associated with the use of family members and seek to control or minimize problems. Enhanced education about the role of ethnocultural variation in improving outcomes in pediatric palliative care is also a reasonable goal. However, the exact content and focus of such educational programs, especially in the complex arena of children who are dying or who will clearly not survive to adulthood, is still unclear. 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 health care 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 [82]. In addition, many current approaches to “competency” training do not use a sophisticated concept of culture or cultural difference and instead encourage a “cookbook” approach focused on learning the knowledge, attitudes, and practices of specified ethnic groups [91]. This approach is flawed in two major ways. First, it is impossible for any practitioner to memorize a catalogue of the world’s ethnocultural groups. And even if such a list of “traits” could be committed to memory or stored in a database, it would still be necessary to verify with each family and even each individual within a family whether he or she adheres to a certain belief or practice relevant to end-of-life care. Intracultural variation is great; cultures change and transform—they are in constant motion. Burial practices or rituals to manage grief may change by necessity following immigration. Laws prohibit certain ways of disposing of bodies or body parts. On the other hand, the time–space compression characteristic of globalization may lead to the preservation of certain practices in spite of significant odds. Chertow describes how Tibetan Buddhist refugees in Chicago preserved key ritual practices conducted at the moment of death, linking to the appropriate religious specialist in the Himalayas via long distance telephone calls [92]. How one thinks about culture matters. A serious flaw in current cultural competency training is a simplistic and unsophisticated account of culture itself [7, 93]. 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

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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. These often are “case based”; trainees must interpret the relevance of cultural difference for a specific patient and family in a particular social and historical context [94]. This approach also allows for attention to issues such as racism, socioeconomic status, and the ways in which social forces intertwine with ethnocultural difference. Boxes D.1 and D.2, based on previous work by one of the authors, suggest an approach to the role of cultural difference in health care generally and provide a “template” for clinicians to use when assessing the features of cultural difference most relevant in providing EOL care for children and families. At the level of health policy, there are also innovations that could improve cross-cultural palliative care for children immediately. However, they may not require a focus on ethnocultural difference, per se. Specifically, efforts to integrate palliative care early in the course of diagnosis for chronic or life-threatening conditions would overcome cultural resistance to palliative care that has at its cause the demand that children and families openly acknowledge and accept that a child is dying, as required by some hospice programs. Such integration of palliative care is a major theme of the IOM report on pediatric palliative care [9]. Although this resistance to acknowledging death is often most pronounced among families from certain Asian backgrounds (such as Chinese Americans or Korean Americans) [8], our research and a review of the adult literature suggests that it is found among all U.S. patient groups. In this instance, a change in policy based on research findings with culturally diverse patients and families may benefit all by calling into question the desirability of requiring that patients (and families) embrace death as a first step to receiving excellent EOL care [95]. And requirements that curative therapies—or supportive care that is costly, such as parenteral nutrition—be forgone as a precondition of hospice enrollments are clearly harmful, and may provide an added barrier to hospice care for children and families where cultural expressions of hope for future recovery (or desire for a miracle) may continue throughout a child’s dying trajectory.6 Indeed, the expression of hope for an ill child’s recovery is inevitably shaped by religion and ethnocultural background, sometimes in ways that are difficult to predict. 6   Public testimony presented to the IOM committee raised this point eloquently.

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Box D.1 Cultural Difference in Health Care Understanding Cultural Difference The meaning of ethnocultural difference in health care must be assessed and understood within a particular social and historical context. Cultural values and attitudes are fluid, not fixed; individuals may or may not embrace particular beliefs. Culture does not predict individual behavior in a straightforward way; it is not a predictive “variable.” Culture is not simply a feature of ethnically or racially different “others.” “Cultural” interpretation reveals significant differences among health care professionals. Cultural pluralism means diversity among care providers as well as patients/ families. Respecting Difference Without Stereotyping Approach the individual first, assess that individual within the context of his or her family. Patients and families should never be approached as empty vessels, the “bearers” of a particular culture. As with statistical or epidemiological “data” about an individual patient, clinical “hunches” or inferences must be evaluated for relevance to a particular patient/family situation. The “dilemma of difference” means that respecting difference may be in conflict with goals of equal treatment. A Template for Assessing Ethnocultural Variation Rather than a list of cultural “traits” (specific to different cultural groups) it is more helpful for clinicians to utilize a “template” that describes the range of variation. Each individual and family can be evaluated with this checklist in mind. For end-of-life care, this list might include the elements listed in Box D.2. We have suggested that the most serious cultural conflicts are likely to arise as disputes about explicit decision making near the end of life. Many accommodations to cultural practices will be relatively easy to implement, such as modifications to protocols for handling the body after death, or allowing healing rituals in the pediatric or neonatal intensive care unit— assuming, that is, that the rituals do not challenge the predominant biomedical approach to the child’s care. In these situations, hospitals and home health agencies can implement flexible policies that take account of difference. Community consultation may be helpful in developing shared goals. However, certain bioethics ideals, such as shared decision making with parents, may actually do harm in some cross cultural situations where

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the parents are looking for explicit recommendations from an authoritative voice within the health care team. When shared decision making is interpreted as requiring that parents must actively decide to “allow” their child to die, conflicts may intensify. We do not yet understand the consequences— long or short term—of active parental involvement in decisions to terminate treatment. Similarly, efforts to implement the practice of “assent” to care (or withdrawal of therapy) by older children and adolescents [10], although well meaning, may create difficulties for families unused to the American ideals of self-determination. The situation will be most acute when family members have different levels of familiarly with this ideal and, in fact, may reject it outright in favor of decision making by parents, community leaders, or deference to medical authority. Suggestions for Future Research: What Do We Need to Learn? What Is the Correct Balance Between Descriptive Research, Normative Analysis, and Policy Research? Clearly, there is a great need for additional descriptive research documenting the relevance of cultural difference to end-of-life care for children and their family caregivers, including a commitment to asking hard questions about the impact of immigration, poverty, and racism on the experience of families. With the profound, well-documented health disparities in morbidity and mortality found in the United States, it is likely that resistance to accepting excellent end-of-life care may persist in certain communities in spite of our best efforts to educate the public about the importance of palliative care. The legacy of high death rates and lack of access will remain salient into the future. We need to target research toward an examination of cultural resistance, to understand its sources and manifestations. Research focusing on the outcome of improving trust in patient–provider relationships needs to acknowledge the discrimination embedded in the U.S. health care system in the past and the reality that unequal care continues, in spite of our best efforts [12, 96]. Research designs should focus not just on the culture of the patient and his or her family, but on the culture of care providers—and on how the cultural assumptions of biomedicine are embedded in systems of health care delivery. There is also the need to ask the normative questions that inevitably arise once descriptive research findings about cultural difference are documented. Under what circumstances should specific clinical guidelines be altered to meet the needs of certain ethnocultural groups, if indeed they should be modified? What are the limits to cultural compromise? Who is best suited to make these determinations—courts, ethics committees, individual clinicians? Claims about respecting difference based on religious beliefs are granted a higher status of protection as a constitutional right.

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Box D.2 A Template for Assessing Ethnocultural Difference in Caring for Children with Life-Limiting Conditions and Their Families Assess the actual language used by the child and family members to discuss illness and disease, including degree of openness in discussing diagnosis, prognosis, and death itself. Can the word cancer be spoken or can other potentially stigmatizing diseases, including HIV or genetic illnesses, be named? What is understood as the cause of the illness? What is its likely course? Can the high likelihood of premature death be acknowledged openly, or will this be seen as potentially dangerous? Is there a desire to keep information contained, or can the family’s broader community be involved, such as schools, churches? When conducting negotiations or discussions through a language interpreter, whether a professional translator or a family member, consider the emotional significance of the information to be communicated, the appropriateness of a particular individual to convey such information, and the possibility of engaging the interpreter as a source of information about the family’s goals and desires. Determine whether the locus of decision-making authority is with the parents exclusively, or includes a larger social unit, such as the family as a whole. If the patient is an older child or adolescent, determine whether the child is expected to be a participant in medical decision making, or is seen as needing protection from such a role. Determine the family’s expectations about the role of the health care team in decision making; specifically, do they value directiveness as opposed to shared decision making, do they have familiarity with the “team approach” characteristic of pediatric palliative care? Consider the relevance of religious beliefs, particularly about the meaning of death, the existence of an afterlife, and belief in miracles. Consider the meaning of a child’s suffering from the family’s point of view, does the suffering of a child or the loss of an infant have particular meaning? Evaluate whether the expression of physical pain (or other symptoms) is allowable or considered a weakness in character or lack of courage. How do culturally-shaped gender roles create expectations about symptom control? Assess how “hope” for a future recovery is negotiated within the family and with health care providers. Is hope directly correlated with continuing aggressive medical interventions?

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Is hospice referral or the suggestion of care at home (vs. the hospital) seen as an indication that health professionals are “giving up”? Assess the family’s degree of fatalism vs. active desire for control of events into the future. Does home care increase a sense of control or lead to fears of abandonment? Determine the family’s views about “appropriate” supportive care for their child or infant. Do parents and other family members wish to participate actively in the physical care, including technical nursing interventions, of their child? Do parents and families believe their role is to provide emotional support or tangible services, such as special meals? Is the child’s independence promoted, or is a dependent role sanctioned as appropriate in the context of chronic, life-limiting illness? Consider issues of gender and power relationships, both within the patient’s family and in encounters with the health care team. Assess whether traditional gender roles may exclude women or girls from full participation in shared decision making. Is the physician or other care provider granted great authority and respect? Do family members fear retaliation for expressing their desires? Take account of the political and historical context, particularly poverty, refugee status, past discrimination and lack of access to care. Have refugees suffered inordinate losses that shape their response to a child death? Do groups that historically have been denied access to health care services suspect that decisions to limit treatment are the result of discrimination, cost control efforts, or possibly the desire to procure organs for others? Determine who “owns” the body and how the body should be approached and handled after death. When planning bereavement services, consider whether it is appropriate to express one’s grief openly, under what circumstances, and for how long. To aid the complex effort of “interpreting” the relevance of cultural dimensions in a particular case, make use of available resources, including community or religious leaders, family members, and language translators.

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However even in the case of protections of religious freedoms, exceptions are made in the case of minor children when the situation is judged to be life threatening. In pediatrics, the classic example of the limits of parental authority is the use of court orders to provide life-saving blood transfusions to infants and children when the parents are devout practitioners of the Jehovah’s Witness faith. Respecting ethnocultural difference in end-of-life care will also require attention to the normative practices of courts and hospital ethics committees. What assumptions undergird their deliberations? The physicians caring for Lia Lee had little difficulty convincing a court that they knew her interests better than her parents. Policies based on a careful examination of the interaction among religious freedoms, parental and child rights, and efforts to implement culturally sensitive care are needed. Excellent descriptive research on ethnocultural difference can inform policy development but will not provide easy answers to the normative questions. Developing policies to guide care for dying children is difficult under the most ideal circumstances [97]. Determining the limits of culturally sensitive care for children with life-limiting conditions and their families will continue to be a daunting challenge in the clinic, in the courts, and for policymakers and legislators. ACKNOWLEDGMENTS For funding our work on cultural dimensions of end-of-life care, we wish to thank The Greenwall Foundation, the National Institute of Nursing Research (R01 029060), the Open Society Institute’s Project on Death in America, the Robert Wood Johnson Foundation, the Oncology Research Fund of the Lucille Packard Children’s Hospital, and the British Columbia Health Research Foundation Community Services Grant Program. Dr. LaVera Crawley, as well as members of the IOM committee, provided helpful comments on earlier drafts. Amer Ahmed, Allison Campbell, Kenny Gundle, and Chara Gupta (all Stanford undergraduates) provided able research assistance and help with preparation of the manuscript. REFERENCES 1.Barnes, L.L., et al., Spirituality, religion, and pediatrics: Intersecting worlds of healing. Pediatrics, 2000. 104(6): p. 899-908. 2.Parsons, T., R. Fox, and V.M. Lidz,The “Gift of Life” and Its Reciprocation.Social Research, 1972. 39(3): p. 367-415. 3.Scheper-Hughes, N., Death without weeping: The violence of everyday life in Brazil. 1992, Berkeley: University of California Press. 4.Burns, J.P.et al., End-of-life care in the pediatric intensive care unit after the forgoing of life-sustaining treatment.Crit Care Med, 2000. 28(8): p. 3060-3066.

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