Truth Telling in the Setting of Cultural Differences and Incurable Pediatric Illness

Abstract

IMPORTANCE-Navigating requests from parents or family caregivers not to disclose poor prognosis to seriously ill children can be challenging, especially when the requests seem culturally mediated. Pediatric clinicians must balance obligations to respect individual patient autonomy, professional truth telling, and tolerance of multicultural values.OBSERVATIONS-To provide suggestions for respectful and ethically appropriate responses to nondisclosure requests, we used a hypothetical case example of a Middle Eastern adolescent patient with incurable cancer and conducted an ethical analysis incorporating (1) evidence from both Western and Middle Eastern medical literature and (2) theories of cultural relativism and justice. While Western medical literature tends to prioritize patient autonomy and corresponding truth telling, the weight of evidence from the Middle East suggests high variability between and within individual countries, patient-physician relationships, and families regarding truth-telling practices and preferences. A common reason for nondisclosure in both populations is protecting

Communication during childhood cancer: Systematic review of patient perspectives

“…Early exploration of the truth-telling preferences of both children and families can facilitate the open discussion of concerns and sociocultural beliefs. [70][71][72] After eliciting the respective values and preferences regarding a certain decision of both the child and parents, clinicians then can offer recommendations that respect parental authority while supporting the emerging autonomy of the child or adolescent. 73 Our findings suggest that even if a child's choice cannot be honored, it is important to children to feel "heard" and valued in informing the final decision.…”

End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice

“…For example, some literature points to familybased decision-making models in different cultures influencing whether the young patient is involved in conversations about their care. 34,47,48 For example, in several non-Western cultures there is less emphasis on individualism and autonomy for the adolescent; rather, family (primarily parents) might prefer to lead conversations and decision making about the young person's care, which may not always involve the young person themselves.…”

“…Recent studies have highlighted various factors, including important familial and cultural factors, which may lead young people to prefer not to engage in these conversations. 33,47 Recent conceptual and theoretical analyses have, however, highlighted the dynamic and complex process of end-of-life communication with adolescents; AYAs' level of awareness around the incurable nature of their disease may interact in a nonlinear and evolving way with their cognitive and emotional preparedness to engage in end-of-life conversations. 55 Younger, teenaged AYAs may especially grapple with this; while their cognitive capacity to consider end-of-life issues is still emerging, they may also have had minimal exposure to death and dying through their life experiences to date.…”

Az orvosi kommunikáció sajátosságai a gyermekonkológia területén, különös tekintettel a palliatív ellátásra

“…Minél korábban és nyíltabban kimondják az igazságot, annál korábban tudja a család elkezdeni az információ feldolgozását és meghozni a megfelelő döntéseket. A jelen ajánlás -az általános orvosi kommunikációs szakirodalom elveinek megfelelően [16] -azt fogalmazza meg, hogy az információt az orvos rendszeres beszélgetések során, kicsi, kezelhető részletekben közvetítse [17].…”

“…Az amerikai gyakorlat az őszinteség híve, hiszen úgy tekintik, hogy nem is tudna a páciens és családja megfelelő döntést hozni, ha nincs minden információ birtokában. A Közel-Keleten tapasztalható trend a nyugati szemléletmód irányában kezdett el változni, és az őszinteség egyre inkább megjelenik az orvosi kommunikációban [17].…”