Blog PedPalASCNET

This blog features expert commentaries on recent publications of interest in pediatric palliative care research. Our bloggers provide their personal take on an article chosen from our monthly citation list and discuss how it relates to trends within the field. To view our search strategy, click here.

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Trends in Pediatric Palliative Care 2016; Issue #12

January 3, 2017

Andrea Johnson, PhD (c), RSW

Feature Article: Rosenberg, A.R., Wolfe, J., Wiener, L., Lyon, M. & Feudtner, C. (2016). Ethics, emotions, and the skills of talking about progressing disease with terminally ill adolescents. JAMA Pediatrics

Although the practice of medical truth-telling has evolved to regularly include full disclosure of medical information to patients, with adolescents, this remains a developing area of practice and a clinical curiosity and interest of mine. Conversations regarding disease progression and prognosis with adolescent patients are challenging, feel uncertain, and often carry an emotional impact on everyone who participates. Within clinical discussions surrounding disclosure of medical information to this population, the thread of ‘to tell or not to tell’ is woven tightly. This thread often becomes the focus of discussion and planning and the argument for and against medical truth-telling can be difficult to navigate. This interesting article is an important review of the ethical justifications, interpersonal perspectives, and pragmatic considerations that should be considered within the context of medical truth-telling with adolescents.

The central tenet of this article is that efforts must be made to compassionately and persistently communicate information about disease and prognosis to adolescents with advanced diseases. Two themes that regularly arise within truth-telling practice are navigating ethical interests and the different perspectives of those involved in the truth-telling. Many ethical issues often present (adolescent patient autonomy vs parent interest and cultural values vs truthful disclosures among many others) and the authors highlight the importance of understanding these diverse ethical tensions within the context of truth-telling. They also point out that there may be times when other ethical values may supersede truth-telling (for example developmental phase of the adolescent, culture, religion) however, I think we have to not lose sight of the adolescent patient within these tensions.

Disclosing disease and prognostic information to adolescents and their parents is made complex because this medical truth-telling is not uniformly supported by those involved. There are many reasons why medical truth-telling may not be supported by clinicians and parents and this review offers a summary of evidence to challenge these perspectives. Notably, a study by Kreicbergs et al. (2004) with 429 bereaved parents demonstrated that no parents who discussed their child’s upcoming death with their child regretted doing so in contrast to 90% of parents who didn’t discuss their adolescent’s death regretted not doing so. The authors also present compellingly that adolescents want opportunities to be medically informed, to process their medical situation, and often want to participate in decision-making.

Finally, within the trend noted above, what is sometimes forgotten in ‘to tell or not to tell’ is what each adolescent wants to know about their disease and prognosis and the extent of their involvement in receiving medical information and making medical decisions. The authors present a relational approach to truth-telling with adolescents and their families that is mindful of process and considers the needs of adolescents and parents. They also provide some helpful conversation starters that will assist clinicians to begin these often difficult conversations. This is an important article for practice. Although medical truth-telling can be emotionally difficult for clinicians, facilitating conversation with adolescents about their disease and their prognosis (if they want this) is patient-centred care. Honest and open conversation about their current medical situations can impact their coping and how they choose to live the remainder of their lives.