Communicating About Prognosis: Ethical Responsibilities of Pediatricians and Parents

Abstract

Clinicians are sometimes reluctant to discuss prognosis with parents of children with life-threatening illness, usually because they worry about the emotional impact of this information. However, parents often want this prognostic information because it underpins informed decision-making, especially near the end of life. In addition, despite understandable clinician concerns about its emotional impact, prognostic disclosure can actually support hope and peace of mind among parents struggling to live with a child’s illness. Children, too, may need to understand what is ahead to manage uncertainty and make plans for the ways their remaining life will be lived. In this article, we describe the ethical issues involved in disclosure of prognostic information to parents and children with life-threatening illness and offer practical guidance for these conversations.

Using Health Provider Insights to Inform Pediatric HIV Disclosure: A Qualitative Study and Practice Framework from Kenya

“…On the American/European approach, for older children and adolescents, the justification for disclosure emphasizes the developing autonomy of the child and the need to know, even and often against parents' wishes. 12,17,[31][32][33][34][35][36] On the Kenyan conception, as articulated by our participants, there was greater sensitivity and empathy given to resistant caregivers and greater effort made to balance parent/caregiver and child interests. When caregivers were not ready for disclosure, providers took an insistent yet respectful approach to bringing caregivers along in the plan for disclosure and demonstrated remarkable sympathy for caregivers.…”

Communicating With Pediatric Families at End-of-Life Is Not a Fantasy

“…Attending to the stressful reality of these situations for both parents and health care providers requires a nuanced orientation that marries a relational, process-oriented approach and the functional assessment of when to initiate discussions. This is a hopeful path forward rooted in evidence already generated (Nyborn et al 2016; Mack and Joffe 2014; Janvier, Barrington, and Farlow 2014). …”

“…Several studies point to communication problems that health care clinicians encounter with their patients and families, particularly at the end of life (Curtis et al 2000). In fact, many barriers exist, as illustrated by the case exemplars outlined by Weiss and Fiester, and may include family misunderstanding about aggressive treatments, lack of clinician training and skills in end-of-life discussions, differences of opinion and conflict regarding goals of care, and generalized discomfort with approaching families about end-of-life issues (Mack and Joffe 2014; Janvier, Barrington, and Farlow 2014). …”

The Impact of Cancer and its Treatment on the Growth and Development of the Pediatric Patient

“…Discussing death with their children who may be or are dying is even more daunting. As difficult as it may be, the vast majority of parents do not regret discussing death/goals of care with their children (J. W. Mack & Joffe, 2014). Moreover, 27% of parents regret not addressing it in one large study (Kreicbergs et al, 2004).…”