PEDIATRICS Vol. 122 No. 3 September 2008, pp. 574-582 (doi:10.1542/peds.2007-3042)
ARTICLE |
What Accounts for Differences or Disparities in Pediatric Palliative and End-of-Life Care? A Systematic Review Focusing on Possible Multilevel Mechanisms
a Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
b Division of General Pediatrics, School of Medicine
c Center of Clinical Epidemiology and Biostatistics
d Center for Bioethics
e The Leonard Davis Institute, University of Pennsylvania, Philadelphia, Pennsylvania
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ABSTRACT |
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 TOP ABSTRACT METHODSRESULTSDISCUSSIONREFERENCES |
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OBJECTIVE. The goal was to clarify potential mechanisms underlying differences/disparities in pediatric palliative and end-of-life care.
METHODS. We systematically searched online databases to identify articles relating to differences/disparities in pediatric palliative and end-of-life care, retaining 19 studies for evaluation. We then augmented this search with a broader review of the literature on the mechanisms of differences/disparities in adult palliative and end-of-life care, general pediatrics, adult medicine, and pain.
RESULTS. The concept of reciprocal interaction can organize and illuminate interacting mechanisms across 3 levels of human organization, namely, broader contextual influences on patients and clinicians, specific patient-provider engagements, and specific patients. By using this rubric, we identified 10 distinct mechanisms proposed in the literature. Broader contextual influences include health care system structures; access to care; and poverty, socioeconomic status, social class, and family structure. Patient-clinician engagements encompass clinician bias, prejudice, and stereotypes; concordance of race; quality of information exchange; and trust. Patient-specific features include perceptions of control; religion and spirituality; and medical conditions.
CONCLUSIONS. Differences and disparities in pediatric palliative and end-of-life care can be understood as arising from various mechanisms that interact across different levels of human organization, and this interactive multilevel model should be considered in designing studies or planning interventions to understand differences and to ameliorate disparities.
Key Words: palliative care • terminal care • cultural diversity • minority groups • social class • socioeconomic factors • health services accessibility • child • multilevel model • hierarchical model
Abbreviations: PEOL—palliative and end-of-life • SES—socioeconomic status • SCHIP—State Children's Health Insurance Program
The imperative in multiple domains of health care to understand racial and ethnic differences and to reduce disparities1–3 applies with equal force to improving the systems of pediatric palliative and end-of-life (PEOL) care.4,5 The line dividing differences from disparities in health care, as articulated in the 2003 Institute of Medicine report Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care,3 separates differences that arise from patient preferences or diverse clinical trajectories of various medical conditions from disparities attributable to discrimination or differential access to the health care system or exposure to the environment. Drawing this line requires knowing about the underlying mechanisms that created either justifiable differences or unjustifiable disparities; such knowledge is equally important for efforts to respect differences and to remediate disparities.
Currently, our knowledge about mechanisms underlying differences or disparities in PEOL care for infants, children, and adolescents is sufficiently scant that we defer drawing judgmental conclusions, instead referring to differences/disparities, which in several studies of pediatric PEOL care are provocative. An assessment conducted in the late 1990s of parental perceptions of pediatric end-of-life care at a children's hospital observed that Spanish-speaking families reported barriers to high-quality palliative care stemming from both language barriers and different culturally specific expectations about how a physician should express affection toward pediatric patients.6 A study of the medical charts of 38 infants who died in a NICU located in the Midwest region of the United States documented that, among the 61% of charts in which a physician documented recommending withdrawal or withholding of life-sustaining medical treatment, 80% of parents of white infants, compared with 62% of parents of black infants, agreed to those limitations in care.7 More recently, a study of death certificate information in all 50 states from 1989 to 2003 revealed that, although the overall proportion of children with complex chronic conditions dying at home has increased, non-Hispanic black and Hispanic white children with complex chronic conditions are 40% to 50% less likely to die at home than are white/non-Hispanic children, after adjustment for decedents' age, gender, and underlying cause of death.8
In the adult population, differences/disparities regarding the place of death, hospice care, and end-of-life decision-making have been documented (Table 1). Population-level data typically (but not always9,10) demonstrate that white patients are more likely to die at home than are nonwhite patients.11–16 Dying at home is often facilitated by hospice care, but ethnic differences in place of death exist among and even within hospice populations.17 Several studies have examined racial and ethnic differences/disparities in hospice enrollment.17–24 Black patients are less likely than nonblack patients to use hospice care19 or to return to hospice care after being discharged.21 When patients have consistent insurance coverage and hospice availability, however, racial/ethnic disparities in hospice enrollment can be ameliorated.22 Regarding differences in end-of-life decision-making,25–35 hospitalized older black patients are more likely to receive cardiopulmonary resuscitation27 and are less likely to have do-not-resuscitate orders than are nonblack patients (Table 1).36 Differences also exist regarding the choice of alternate decision-makers.29,32,33
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To increase our understanding of the potential social and cultural mechanisms that might generate racial and ethnic differences/disparities regarding pediatric palliative care, we conducted a systematic review of the published literature regarding potential mechanisms. Although research on adult care differences/disparities has postulated a variety of mechanisms underlying differences/disparities in health status generally3 and in pain specifically,37,38 as well as how clinicians' attitudes and behaviors contribute to the creation and propagation of disparities,37,39,40 we think this effort to synthesize possible mechanisms regarding disparities in health care generally and in pediatric PEOL care specifically is both warranted and timely. To organize the set of potential interrelated mechanisms, we performed this review within the conceptual framework of reciprocal interaction (Fig 1), which was put forth most completely by the social learning theorist Albert Bandura,41 who described an interactive multilevel interface between behavioral, cognitive, and broader contextual influences.
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METHODS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONREFERENCES |
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In January 2007, we searched the online databases Medline, CINAHL, PsychINFO, and Sociological Abstracts. We included articles based on the US population and articles reporting international studies with "social class" as a MeSH term or descriptor; articles reporting on other populations or not focused on social class were excluded.
In the Medline and CINAHL searches, we used the following MeSH terms as key words: (1) palliative care or terminal care, (2) cultural diversity or minority groups or social class or socioeconomic factors or health services accessibility, and (3) child. Of the 91 articles identified in Medline, 22 studies reported data regarding human subjects; 5 of the 9 US studies were included.42–45 Excluded studies focused on surgical palliation (2 reports), geriatric trauma, ethics training in pediatric residency, response to a pet's death, and voluntary euthanasia. One international study was included.46 Of the 43 articles identified in CINAHL, 15 reported data regarding human subjects; 3 of 5 US studies were included.18,44,47 One excluded study focused on custody issues among adult oncology patients, and the other addressed attitudes among school nurses. One international study was included.48
In PsychINFO, we searched the following descriptors as key words: (1) racial and ethnic differences or social class or socioeconomic status (SES), (2) palliative care or terminally ill patients or death and dying, and (3) child or pediatric. We identified 26 articles, with 19 limited to English-language and peer-reviewed journals. Of the 17 empirically based studies, 1 of which was published twice,49 9 US studies were excluded, because 4 focused on violent death and 5 focused on bereavement after the death of a parent or child. Three international studies were included.50–52 In Sociological Abstracts, our search of (1) pediatrics or children, (2) palliative care or terminal care or terminal illness, and (3) minority groups or racial differences or cultural groups or SES or social class yielded 1 book and no journal articles.
We augmented the database searches, which yielded 19 suitable articles, by scrutinizing the articles' citations. In addition to the systematic review, we drew from the literature on the mechanisms underlying differences/disparities in adult PEOL care, general pediatrics, adult medicine, and pain as they relate to race/ethnicity, SES, and social class and health services accessibility.
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RESULTS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONREFERENCES |
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Classification
We classified the 10 mechanisms identified in the literature as chiefly involving reciprocal interactions between broader contextual factors and either patients/families or clinicians, the engagements between patients/families and clinicians, or aspects of an individual patient/family's cognition, behavior, or condition.
Level A: Broader Contextual Influences on Patients/Families and Clinicians
Health Care System Structure
Population-level data indicate that death at home is associated with aspects of the health care system structure, including greater availability of hospice clinicians,12 fewer available hospital beds,12,15 higher home birth rates,15 and greater local area wealth.15 Systematic factors, such as reimbursement barriers47 or the willingness of local hospices to provide care for children, also may limit services that support home death for infants and children.
Hospice referral is partly dependent on aspects of the health care system structure. Among pediatric oncologists, the probability of hospice referral is increased among larger groups of oncologists and oncologic practices with ready access to the services of a hospice agency.53 Within the Medicare population, hospice use is greater in areas with fewer hospital beds, lower in-hospital death rates, and greater health maintenance organization enrollment.54 Patients residing in regions with more hospital beds, greater hospice capacity, or a greater proportion of generalists also enroll earlier in hospice.55 Hospices in the most rural areas have the lowest volumes, and people in more-rural areas are less likely to receive hospice care.56 Constraints in finances, staffing, coordination of care, and patient volume may limit access to hospice care among rural residents.57
Broad availability of hospice services may diminish the impact of the health care system structure on hospice use. Among counties where hospice care is available, aspects of the health care system structure and area demographic variables account for little of the variation at the county level.58 The counties where hospice care is not available, however, generally have fewer medical resources and populations with lower SES,58 which suggests fundamental structural and socioeconomic barriers to the establishment of hospice programs.
Access to Care
Minority children generally face significant disparities in access to care,2,59 and many disparities are reduced when access to care is improved. Although black and Hispanic children are less likely to have a usual source of care before enrollment in State Children's Health Insurance Program (SCHIP),60 SCHIP coverage is associated with improved access, continuity, and quality of care for children of all races/ethnicities and reduced disparities in access, unmet needs, and continuity of care.61
Persistent disparities in quality of care for Hispanic children61 may be partly explained by language barriers. Limited English proficiency of parents increases the odds of children having fair or poor health status, spending 
1 day in bed because of illness, and not being brought for needed medical care.62 In addition, infants of parents whose primary language is not English are one half as likely to receive all recommended preventive care visits.63 Use of medical interpreters is currently inadequate,2 and failure to use interpreters may be particularly problematic in discussions of sensitive topics such as PEOL care.
Minority patients have limited access in particular to pain management, a critical component of palliative care. Pharmacies located in predominantly Hispanic and black neighborhoods are less likely to store opioid analgesics in their on-site inventory, compared with pharmacies in non-Hispanic white neighborhoods.64 Among patients with chronic pain, access to care regarding their pain was increased if they had health insurance coverage or reported higher levels of annual personal income, and access was reduced if they reported having financial concerns or were of Hispanic ethnicity.65 Although the level of pain among seriously ill inpatients does not vary according to race,66 minority patients with cancer pain are less likely to receive adequate pain management in nursing home67 and outpatient68,69 settings.
Poverty, SES, Social Class, and Family Structure
Access to health care is closely linked to poverty and lower SES, which in turn are associated with both minority status and differences/disparities in morbidity and mortality rates.70–75 Although children from poor families are less likely overall to have any chronic conditions (by parental report), they are at higher risk for having severe chronic conditions, being uninsured, and lacking a usual source of care.71 Being black, American Indian, Hawaiian, Puerto Rican, male, or of lower SES also is associated with higher child mortality rates.73 The differences/disparities extend to PEOL care, inasmuch as children with complex chronic conditions who live in more-affluent neighborhoods are more likely to die at home than are those living in poorer areas.76 Regarding SES and end-of-life decision-making among adults, families who report economic hardship are more likely to express a preference for comfort care over life-extending care; among these families reporting economic hardship, white families are more likely to prefer comfort care than are black families.77
Population-based studies in England have found that ethnic minority status,46 social deprivation (a measure of lower income and fewer resources),46 and lower social class48 are associated with decreased likelihood of dying at home. During the first 10 years of life in England, there is a graded association between increasing social class and decreasing mortality rate.49,52 Similarly, Finnish children in the child welfare system have excess deaths, in comparison with both the general population and the segment of the population composed of families whose primary employment is manual labor.50 Although social class is only seldom considered in the US literature, data from other developed nations suggest that class may significantly influence health disparities.9,65–69
Poverty, SES, and social class are also closely tied to family structure. Black and Hispanic mothers are more likely to be unmarried,78 and black and Hispanic children enrolled in SCHIP are more likely to come from single-parent households than are white children.61 Single-parent families are associated with generally poorer child health70,79 and greater prevalence and impact of disabilities.80 Among adults, married people, particularly men, are more likely to die at home12,17 and less likely to die in nursing homes,10 and Hispanic and black hospice patients are less likely than white patients to have a spouse as caregiver.18 Furthermore, ethnic differences in the designation of primary decision-makers30,32,33 are likely influenced by family structure.
Cumulative social disadvantage, a construct combining poverty, low parental education levels, and single-parent household structure, is associated with poorer health across race/ethnicity categories.79 Although some studies attribute racial and ethnic differences/disparities primarily to poverty or family structure,72,80 others report significant differences/disparities after adjustment for poverty and SES.70,74,75
Finally, the influence of SES on differences/disparities may differ depending on the composition of the community. For example, although greater likelihood of poor health outcomes is generally associated with decreased parental education, this association is stronger among white and black children and is weaker, nonexistent, or even reversed among Hispanic and Asian children.81
Level B: Engagements Between Patients/Families and Clinicians
Clinician Bias, Prejudice, and Stereotypes
Biases and prejudices (defined as unjustified negative beliefs3) and stereotypes (beliefs based on group membership37) influence patient-clinician engagements. Patients' sociodemographic characteristics, including race, are associated with clinicians' beliefs about patients82 and the treatments offered to patients.83,84 Race/ethnicity may have an even greater impact on treatment decisions when clinical uncertainty and complexity prevail,37 such as in the context of end-of-life decision-making. As clinicians incorporate psychosocial perceptions into end-of-life decision-making,42 bias, prejudice, and stereotypes associated with race/ethnicity may influence clinical decisions and ultimately contribute to disparities.
Concordance of Race
Several studies suggest that patients with race-concordant clinicians have more-positive perceptions of clinicians and the care they receive,85–87 but the degree to which racial discordance contributes independently to health differences/disparities has not been clarified. Attributes of the patient-clinician interaction may alter the effect of race/ethnicity discordance. For instance, when pediatricians remain patient-centered (with interpersonal sensitivity, partnership, and medical information-giving), longitudinal relationships facilitate psychosocial disclosure and may ameliorate communication barriers related to racial discordance.88 In a complementary manner, shared values, goals, and expectations regarding PEOL care may explain the effect of discordance. Black physicians are less likely than white physicians to report positive attitudes toward advance care planning and, in response to clinical scenarios, are more likely to request aggressive treatments for themselves,89 preferences similar to those expressed by black patients.25,90
Quality of Information Exchange
The quality of information exchange and collaborative communication with the patient/family is likely a crucial factor exacerbating or ameliorating differences/disparities. Communication is considered to be a priority for pediatric PEOL care.4,6,91–93 Palliative care consultations and discussions of end-of-life issues in pediatric hospitals have been associated with fewer medical procedures,94 more support services for families,94 and greater use of opioids and sedatives.95 Although the impact of race/ethnicity on pediatric end-of-life communication has yet to be studied, communication problems in health care are generally more prevalent among minorities. For instance, Hispanic, Asian American, and black patients were more likely to report a communication problem during a health care visit within the past 2 years or to perceive being treated disrespectfully during health care encounters.2
Trust
Trust, which is fundamental to the patient-clinician relationship, has been examined most extensively in the black community, which operates within an historical legacy of exploitation and neglect96,97 and the resulting fear of receipt of inferior care.25 The ensuing racial differences regarding levels of interpersonal and institutional trust likely contribute to differences/disparities in PEOL care. Trust in specific physicians, trust in the medical profession, trust in hospitals, and trust in insurers are all important dimensions of health care experiences.98 Studies suggest that black patients are less likely to trust health care clinicians.99–101 One study revealed that many black patients have deep distrust toward health care systems and fear that care is based on the ability to pay,25 but another study showed that, although black respondents are less likely to trust their physicians, they are more likely to trust their health care plans.101
Level C: Individual Characteristics of Patients and Families
Perceptions of Control and Self-efficacy
The patient-clinician relationship can support or impede the potential for patients and families to maintain a sense of control. Control is often considered to be a priority for PEOL care.43,102,103 However, cultural expectations may differ regarding the importance of individual control at the end of life.25,90,104 In a survey of 800 respondents from 4 ethnic groups, European Americans emphasized individual autonomy, Korean Americans generally expect family members to make end-of-life decisions, Mexican Americans rely more heavily on physician judgments, and black patients and families more often distrust physicians and prefer more-aggressive treatment.25 A qualitative study revealed similar observations.90
Because expectations may differ among diverse cultural groups, it cannot be assumed that racial and ethnic differences represent disparities. For example, differences/disparities in pain management38,67–69,105–109 may be partly explained by racial and ethnic differences in perceptions of control and self-efficacy. Cultural differences in the willingness to abdicate control, including a belief in stoicism and a reluctance to develop tolerance or addiction, may directly influence adequate pain management.105 Moreover, differences/disparities in pain-related distress and functional status are reduced when perceptions of control over pain are held constant.109 The relationship between pain and ethnicity also may be mediated by self-efficacy, the perception that actions will produce desired effects and eliminate undesired ones.110 For instance, among patients with sickle cell disease, self-efficacy is associated with physical and psychological symptoms.111
Religion and Spirituality
Religion and spirituality are cited by many people (especially members of minority communities) as primary resources they use to cope with symptoms and to make decisions at the end of life.107,112–115 Black patients are more likely to rely on religion and spirituality to cope with cancer, and patients with cancer with greater reliance on spiritual coping are less likely to have a living will and more likely to desire life-sustaining measures.115 Similarly, disagreement with hospice philosophy is associated with church attendance and black race.114 At the individual and community levels, religious leaders and spiritual support staff members may influence perceptions. Investigators are beginning to consider the role of black religious leaders in shaping community perceptions regarding health care.114
Medical Conditions and Risks
Although they are often confounded by the influence of broader contextual factors, individual factors (such as genetic susceptibility or specific aspects of a person's physiologic or psychological constitution) affect disease across the continuum of care and differ according to race/ethnicity. Black individuals have higher overall mortality rates,45,78,116 higher infant mortality rates,78 and decreased life expectancy,116 and causes of death vary according to ethnicity among both children45,78 and adults.13,45 In addition, race/ethnicity may be related to survival rates after diagnosis. For example, minority patients with cancer have decreased 5-year survival rates, compared with white patients.75 Because the place of death is related to the underlying medical condition,8–12,14,16 decline before death,16 and time of survival after diagnosis,12,14 racial and ethnic differences in medical conditions may affect differences/disparities in PEOL care.
Interactions of Mechanisms Within and Between Levels
The mechanisms underlying health care differences/disparities, as the outline of evidence presented above indicates, are multifaceted and, importantly, interrelated. Indeed, a major attribute of the theory of reciprocal interaction in the context of health care differences/disparities (Fig 1) is that it posits interactions between mechanisms, both within and between levels, whereby the operation of one mechanism can modify the impact of another mechanism, with the first mechanism either augmenting or diminishing the effect of the second mechanism.
Some specific examples can clarify these interactions. Within what we labeled patient-provider engagements (level B), a longitudinal observational study of parent-physician interactions demonstrated that the quality of information exchange could modify the impact of concordance of race; when physicians remained patient-centered (a construct including interpersonal sensitivity, partnership, and medical information-giving), the impact of racial discordance between black mothers and white female pediatricians decreased over time.88 Similarly, an observational study of children with chronic health conditions (a level C factor) showed not only that children with chronic health conditions were more likely to be uninsured and to lack a usual source of care, compared with children without chronic health conditions, but also that chronically ill children from poor families (a level A factor, ie, broader contextual influences) were much more likely to be uninsured and to lack a usual source of care. This suggests that poverty exacerbates the mechanism through which chronic health conditions alone hamper health care coverage and delivery.71
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DISCUSSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONREFERENCES |
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Just as human societies and cultures are composed of many components arrayed in multiple levels of organization, interacting over time, so too are the factors and mechanisms that influence how we are cared for when we are dying. In our systematic review of the pediatric literature and consideration of relevant adult literature, we identified broader contextual influences, patient-clinician engagements, and patient-specific characteristics as mechanisms underlying differences/disparities in pediatric PEOL care.
This thorough review of the pediatric literature has 3 limitations that warrant consideration. First, our analysis was hampered by the notable paucity of relevant pediatric PEOL care literature, which required us to rely on the adult PEOL literature. Although the specific degrees of differences/disparities observed among adults should not be inferred as representing the situation for children, we do think that the mechanisms operating in the adult realm are also active in the realm of pediatrics. Second, the adult PEOL literature was compromised by heterogeneous characterizations of race, failure to account for variations within ethnic groups, predominantly cross-sectional study designs that did not clarify the temporal order of potentially cause-and-effect sequences, and inadequate assessment of patient and family preferences. Third, given the broad spectrum of the various mechanisms we considered, we had to select from the extensive set of published adult studies those we judged as best illustrating key aspects of each mechanism.
Despite these limitations, the interactive multilevel model of reciprocal interactions that we propose provides a useful rubric for consideration of differences/disparities. Multilevel models that delineate explicitly the various difference/disparity mechanisms, and the interactions among those mechanisms, are essential for future observational and interventional research.117,118 For example, a longitudinal multihospital study of symptom progression in patients from different racial or ethnic groups would be well served to analyze the data regarding symptom scores over time not only as belonging to specific patients but also as being nested within the context of clinical engagements (such as the availability of palliative care consultative services and language interpreters within each patient's hospital) and of broader contextual influences (such as regional variations in the availability of hospice care). Of note, the multilevel model, by demanding that we state explicitly whether a factor such as poverty or social class is more pertinent at the level of individual patients (and what they can afford) or at the level of the communities in which the patients reside (and what services are available), urges careful thought about the hypothesized disparity-generating mechanism.119
The reciprocal interaction model also motivates further inquiry about the origins of preferences about PEOL care. Specifically, if patients/families are understood as being affected by their health care and broader environment, do these PEOL care preferences reflect only personal values, or do they reflect attitudes that have arisen in response to persistent differences/disparities regarding how specific groups have been treated? The model also motivates inquiry in the other direction. If patients/families, through their behavior, influence their health care providers and environment, how do we distinguish between appropriate and inappropriate adaptation to patient/family values and behaviors?
Finally, the multilevel reciprocal interaction model can facilitate the conceptualization, design, and evaluation of interventions that intend to respect differences and to diminish disparities in pediatric PEOL care. For example, partnerships between community-based care providers and hospital-based pediatric palliative care teams may be able to create a more robust environment to provide PEOL care both across cultures and within ethnic communities.120 Ideally, these partnerships would involve eliciting preferences regarding care for all patients/families at the time of first engagement and throughout hospice care,121 include not only health care clinicians but also members of religious and spiritual communities, and have plans to intervene, if necessary, regarding socioeconomic determinants of access of care. Program evaluation can then be based both on the achievement of the desired outcome and on potentially important process measures, such as the degree of religious community engagement or success in overcoming economic barriers to care.
Ultimately, the multilevel model of reciprocal interaction will be valuable to the degree that it increases our understanding of multiple interrelated mechanisms and helps to ameliorate existing disparities in pediatric PEOL care and to avert perpetuation of disparities as new PEOL programs are developed. With attention to these disparities and the mechanisms underlying them, we hope that medical care of the highest quality, both palliative and nonpalliative, will be within reach for all children with life-limiting conditions.
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ACKNOWLEDGMENTS |
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We thank Dr Christopher L. Edwards, Dr Marc Hoffmann, and Kari R. Hexem for their comments on our initial conceptualization of this review and drafts of our manuscript.
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FOOTNOTES |
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Accepted Dec 20, 2007.
Address correspondence to Chris Feudtner, MD, PhD, MPH, Division of General Pediatrics, Children's Hospital of Philadelphia, 3535 Market St, Room 1523, Philadelphia, PA 19104. E-mail: feudtner{at}email.chop.edu
The authors have indicated they have no financial relationships relevant to this article to disclose.
| What's Known on This Subject Scant empirical evidence addresses differences or disparities that may exist in pediatric palliative care, and no work has described possible mechanisms.
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| What This Study Adds This study synthesizes the existing pediatric and adult data regarding possible mechanisms that would generate differences or disparities.
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PEDIATRICS (ISSN 1098-4275). ©2008 by the American Academy of Pediatrics
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