When Children Die Improving Palliative and End-of-Life Care for Children and Their Families (2003) / Chapter Skim
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Appendix D: Cultural Dimensions of Care At Life's End for Children and Their Families
Appendix D: Cultural Dimensions of Care At Life's End for Children and Their Families
Pages 509-552
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From page 509... ...
" Linda Barnes, et al., 2000 t1] "Treatment may be given more as a ritual commitment to the vane of fighting death than out of rational expectation that it will help the patients." Talcott Parsons, Renee Fox, and Victor Lidz, 1972 t21 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.
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From page 510... ...
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-oflife care and bereavement. When cultural difference is considered, we generally think of differences among families from varied ethnic backgrounds.
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From page 511... ...
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)
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From page 512... ...
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.
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From page 513... ...
released national standards for "culturally and linguistically appropriate health services" t141. 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.
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From page 514... ...
:1-105. 20 o ' 50 = /~/ White Race Black Other Suicide Homicide Accidents FIGURE D.2 Death rates for white and black males, ages 15 to 24 (1998)
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From page 515... ...
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 t171. 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 t11, 18, 191.
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From page 516... ...
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.
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From page 517... ...
SOURCE: United States Census Bureau
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From page 518... ...
SOURCE: United States Census Bureau.
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From page 519... ...
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.
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From page 520... ...
In health care research there is considerable confusion in terminology, particularly with regard to the use of the term "race." In a review of articles making comparisons among human population groups published in Health Services Research, Williams noted, "Terms used for race are seldom defined and race is frequently employed in a routine and uncritical manner to represent ill-defined social and cultural factors" t251. Lack of precision naively conflating race, biology, and culture makes it impossible to tease out the causes of health disparities between racialized2 populations and more privileged groups.
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From page 521... ...
More sinister applications of genetic reductionism may link excess homicide rates in certain populations to a genetic predisposition to violence. Although this example may seem extreme, it points out the importance of clear thinking 1 J ~ 1 1 ~7 1 1 1 · ·1 · ~ · · · · 1 about the relative contribution ot genetic variation, environment, and social context in thinking about cultural difference in health care.
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From page 522... ...
Historically underserved populations may have special barriers to EOL care that have little to do with difficulties in communication and are not related to their identification with a certain set of ethnic traditions. In a ground-breaking study, Morrison documented the lack of availability of narcotic analgesics in minority communities such as Harlem; pharmacies simply did not carry the opiates that are "state-of-the-art" drugs for pain control in children as well as adults t381.
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From page 523... ...
include attention to ethnocultural difference. A Caution Regarding Use of Language Ethnocultural Difference In the discussion that follows, we define culture as the "the conscious and unconscious structures of communal life that frame perceptions, guide decisions, and inform actions.
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From page 524... ...
Here we ask the following questions: Can we extrapolate from what we know about the cultural dynamics of providing EOL care to adults? Do significant differences exist when the goal is providing culturally sensitive end-of-life care to infants or children with life-limiting conditions and their families?
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From page 525... ...
Watching a child fall sick and die is a crisis of meaning for families, and it is through their cultural understandings and practices that families struggle to explain and make sense of this experience t501. Extrapolating from the growing literature on cultural issues in EOL care for adult patients and families, and gleaning what has been documented in the more limited pediatric literature, it is possible to identify the key domains of clinical significance in caring for children from diverse ethnocultural backgrounds who are unlikely to survive to adulthood.
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From page 526... ...
Although the parents' role in making decisions on behalf of their infant or child must be respected, few parents, 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.
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From page 527... ...
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 t531.
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From page 528... ...
Although the Hill-Burton act is no longer in force, it had significance in previous standards. In return for Hill-Burton funding support, medical facilities agreed to be bound in perpetuity by provisions requiring "community service." Facilities must make services "available to all persons residing in the facility's service area without discrimination on the ground of race, color, national origin, creed or any other ground unrelated to an individual's need for service or the availability of the needed service in the facility." The Office of Civil Rights (in the DHHS)
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From page 529... ...
A skilled practitioner creates an open environment in which the child, family, and perhaps a ritual specialist from the community may openly discuss the appropriate blending of biomedically sanctioned medicines and procedures with ethno-medical products. Although some patent medicines and food supplements are known to be harmful and may actually contain potent pharmaceuticals, the health care team is unlikely to obtain a full accounting of all treatments used for a particular child
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From page 530... ...
Ethnocultural 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.
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From page 531... ...
There are significant barriers to hospice care for children in general, since many hospices take children only rarely, and few have dedicated programs for children t91. Thus, the barriers to care for children from diverse ethnocultural backgrounds are likely to be even higher.
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From page 532... ...
The cultural background of the family may be narticu~ ~ ~ ~ ~ 1 1 1 1- .
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From page 533... ...
In Western countries, it is often said that when a person's parents die, one loses the past, but when one's child dies, the parents lose their future. The death of a child represents a unique loss.
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From page 534... ...
In Korea, external expression of grief when one's parents die is expected and almost demanded, whereas when a child dies, the expression of grief by crying is more complicated. Internal grief may be more common.
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From page 535... ...
Clinical interventions to aid the bereaved 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.
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From page 536... ...
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 t761. There is enormous variation in what is considered appropriate behavior following death.
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From page 537... ...
Indeed, our values have led to the development of cures for many pediatric ailments and an increase in the number of children living with serious chronic illness. Paradoxically, the high value placed on children and their care, and the fact that child death is viewed as a particularly profound tragedy, provide the cultural roots of our current lack of palliative care services for children.
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From page 538... ...
Recognizing Cultural Differences That Are Easy to Respect in Practice Versus Those That Offer Fundamental Challenges to Pediatric Palliative Care Providers Respecting cultural difference may offer a profound challenge to health care practitioners' most fundamental values. In perhaps the best "text" explaining the cultural dynamics underlying the treatment of a critically ill child, Anne Fadiman, in The Sprit Catches You and You Fall Down, offers a detailed account of how the physicians caring for a young Hmong child with life-threatening, difficult-to-contrl!
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From page 539... ...
Unfortunately, these efforts at change ignore a fundamental and problematic social fact a profound cultural resistance to giving up hope for recovery, a problem in EOL care generally that is most pronounced when a family must negotiate the details of a child's dying while simultaneously mourning the loss of that child's future. Difficult for all families and for patients of all ages, this negotiation is particularly troubling if the family has no idea of the cultural "script" being followed by health care providers.
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From page 540... ...
Efforts to change the culture through engagements with the media encouraging op-ed pieces in newspapers, script-writing workshops, and so forth may educate potential patients about existing approaches in palliative and hospice care. Of course, efforts to target media serving different communities speaking different languages would be critical.
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From page 541... ...
In spite of the lack of firm research results on palliative care practices in diverse ethnocultural communities, there is much that can be accomplished immediately to encourage appropriate care for children with life-limiting conditions and family members. Since communication is difficult in all pediatric palliative care settings, specific efforts to improve the availability of language translation services are clearly indicated.
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From page 542... ...
There is a naive 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.
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From page 543... ...
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.
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From page 544... ...
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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From page 545... ...
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?
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From page 548... ...
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 t971.
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From page 549... ...
Marshall, and B.A. Koenig, Respecting cultural differences at tI7e end of life.
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From page 550... ...
and R Steele, Families in pediatric palliative care.
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From page 551... ...
62. Perkins, H.S., Cultural differences and etI7ical issues in tI7e problem of autopsy requests.
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From page 552... ...
813-828. Truog, R.D., et al., Recommendations for end-of-life care in tI7e intensive care unit: TI7e EtI7ics Committee of tI7e Society of Critical Care Medicine.
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