Rosenberg Abby R, Starks Helene, Unguru Yoram, Feudtner Chris, Diekema Douglas
Seattle Children's Hospital, Cancer and Blood Disorders Center, Seattle, Washington.
Seattle Children's Research Institute, Treuman Katz Center for Pediatric Bioethics, Seattle, Washington.
JAMA Pediatr. 2017 Nov 1;171(11):1113-1119. doi: 10.1001/jamapediatrics.2017.2568.
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.
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 the child from distressing information. Cultural relativism fosters tolerance of diverse beliefs and behaviors by forbidding judgment on foreign societal codes of conduct. It does not justify assumptions that all individuals within a single culture share the same values, nor does it demand that clinicians sacrifice their own codes of conduct out of cultural respect. We suggest some phrases that may help clinicians explore motivations behind nondisclosure requests and gently confront conflict in order to serve the patient's best interest.
It is sometimes ethically permissible to defer to family values regarding nondisclosure, but such deferral is not unique to cultural differences. Early setting of expectations and boundaries, as well as ongoing exploration of family and health care professional concerns, may mitigate conflict.
应对来自父母或家庭照顾者不向重症儿童透露预后不良情况的要求颇具挑战性，尤其是当这些要求似乎受到文化影响时。儿科临床医生必须在尊重患者个体自主性、专业告知真相以及容忍多元文化价值观的义务之间取得平衡。
为了针对不透露要求提供尊重且符合伦理的恰当回应建议，我们采用了一个患有无法治愈癌症的中东青少年患者的假设案例，并进行了伦理分析，其中纳入了（1）来自西方和中东医学文献的证据，以及（2）文化相对主义和正义理论。虽然西方医学文献倾向于优先考虑患者自主性及相应的告知真相原则，但中东的证据表明，在不同国家、患者与医生的关系以及家庭之间，关于告知真相的做法和偏好存在很大差异。在这两个人群中，不透露信息的一个常见原因是保护孩子免受令人痛苦的信息影响。文化相对主义通过禁止对外国社会行为准则进行评判，促进了对不同信仰和行为的容忍。它并不能证明假设单一文化中的所有人都共享相同价值观是合理的，也不要求临床医生出于文化尊重而牺牲自己的行为准则。我们建议了一些措辞，可能有助于临床医生探究不透露要求背后的动机，并温和地面对冲突，以维护患者的最大利益。
在某些情况下，从伦理角度而言，听从家庭关于不透露信息的价值观是可以接受的，但这种听从并非文化差异所独有。尽早设定期望和界限，以及持续探讨家庭和医疗保健专业人员的担忧，可能会缓解冲突。
