Prognostic Disclosures to Children: A Historical Perspective

Author:

Sisk Bryan A.1,Bluebond-Langner Myra2,Wiener Lori3,Mack Jennifer45,Wolfe Joanne67

Affiliation:

1. Department of Pediatrics, St Louis Children’s Hospital, St. Louis, Missouri;

2. Louis Dundas Centre for Children’s Palliative Care, Institute of Child Health, University College London, London, England;

3. National Cancer Institute, Center for Cancer Research, Pediatric Oncology Branch, Bethesda, Maryland;

4. Departments of Pediatric Oncology and Division of Population Sciences, and

5. Division of Pediatric Hematology/Oncology, and

6. Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts; and

7. Department of Medicine, Boston Children’s Hospital, Boston, Massachusetts

Abstract

Prognostic disclosure to children has perpetually challenged clinicians and parents. In this article, we review the historical literature on prognostic disclosure to children in the United States using cancer as an illness model. Before 1948, there was virtually no literature focused on prognostic disclosure to children. As articles began to be published in the 1950s and 1960s, many clinicians and researchers initially recommended a “protective” approach to disclosure, where children were shielded from the harms of bad news. We identified 4 main arguments in the literature at this time supporting this “protective” approach. By the late 1960s, however, a growing number of clinicians and researchers were recommending a more “open” approach, where children were included in discussions of diagnosis, which at the time was often synonymous with a terminal prognosis. Four different arguments in the literature were used at this time supporting this “open” approach. Then, by the late 1980s, the recommended approach to prognostic disclosure in pediatrics shifted largely from “never tell” to “always tell.” In recent years, however, there has been a growing appreciation for the complexity of prognostic disclosure in pediatrics. Current understanding of pediatric disclosure does not lead to simple “black-and-white” recommendations for disclosure practices. As with most difficult questions, we are left to balance competing factors on a case-by-case basis. We highlight 4 categories of current considerations related to prognostic disclosure in pediatrics, and we offer several approaches to prognostic disclosure for clinicians who care for these young patients and their families.

Publisher

American Academy of Pediatrics (AAP)

Subject

Pediatrics, Perinatology, and Child Health

Reference103 articles.

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2. Code of Ethics of the American Medical Association. 1847. Available at: https://collections.nlm.nih.gov/bookviewer?PID=nlm:nlmuid-63310420R-bk. Accessed April 8, 2016

3. Shall patients be informed that they have cancer or syphilis?;Mapes;N York Med J,1898

4. Do professional ethics require a physician to disclose to his patient an unfavorable prognosis.;Sutro;Med Times,1915

5. What Philadelphia physicians tell patients with cancer.;Fitts;J Am Med Assoc,1953

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