Rosenberg Abby R, Wolfe Joanne, Wiener Lori, Lyon Maureen, Feudtner Chris
Seattle Children's Hospital, Cancer and Blood Disorders Center, Seattle, Washington2Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington3Department of Pediatrics, University of Washington School of Medicine, Seattle.
Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts5Department of Medicine, Boston Children's Hospital and Harvard Medical School, Boston, Massachusetts.
JAMA Pediatr. 2016 Dec 1;170(12):1216-1223. doi: 10.1001/jamapediatrics.2016.2142.
For clinicians caring for adolescent patients living with progressive, life-threatening illness, discussions regarding prognosis, goals of care, and treatment options can be extremely challenging. While clinicians should respect and help to facilitate adolescents' emerging autonomy, they often must also work with parents' wishes to protect patients from the emotional distress of hearing bad news.
We reviewed the ethical justifications for and against truth-telling, and we considered the published ethical and practice guidance, as well as the perspectives of patients, parents, and clinicians involved in these cases. We also explored particular challenges with respect to the cultural context, timing, and content of conversations at the end of adolescents' lives. In most cases, clinicians should gently but persistently engage adolescents directly in conversations about their disease prognosis and corresponding hopes, worries, and goals. These conversations need to occur multiple times, allowing significant time in each discussion for exploration of patient and family values. While truth-telling does not cause the types of harm that parents and clinicians may fear, discussing this kind of difficult news is almost always emotionally distressing. We suggest some "phrases that help" when clinicians strive to deepen understanding and facilitate difficult conversations with adolescents, parents, and other family members.
The pediatrician's opportunities to engage in difficult conversations about poor prognosis may be rare, but such conversations can be crucial. These discussions affect how patients live at the end of their lives, how they die, and how their families go on. Improved understanding of basic principles of communication, as well as augmented understanding of patient, family, and clinician perspectives may better enable us to navigate these important conversations.
对于照料患有进行性、危及生命疾病的青少年患者的临床医生而言，关于预后、护理目标和治疗选择的讨论极具挑战性。虽然临床医生应尊重并协助促进青少年逐渐形成的自主性，但他们通常还必须兼顾父母的意愿，以保护患者免受听闻坏消息所带来的情感困扰。
我们审视了支持和反对告知真相的伦理依据，考量了已发表的伦理和实践指南，以及参与这些病例的患者、父母和临床医生的观点。我们还探讨了在青少年生命末期进行谈话时，在文化背景、时机和谈话内容方面的特殊挑战。在大多数情况下，临床医生应温和但坚定地直接与青少年进行关于其疾病预后以及相应希望、担忧和目标的谈话。这些谈话需要多次进行，每次讨论都要留出大量时间来探讨患者和家庭的价值观。虽然告知真相不会造成父母和临床医生可能担心的那种伤害，但讨论这类坏消息几乎总是会令人情绪痛苦。当临床医生努力加深理解并促进与青少年、父母和其他家庭成员进行艰难谈话时，我们给出了一些“有用的表述”。
儿科医生进行关于不良预后的艰难谈话的机会可能很少，但此类谈话至关重要。这些讨论影响着患者生命末期的生活方式、死亡方式以及其家人如何继续生活。更好地理解沟通的基本原则，以及增强对患者、家庭和临床医生观点的理解，可能会使我们更能应对这些重要谈话。
