Can You Keep a Secret?

Column Author: Sunny Jeong, BScN, RN, MBE | Pediatric Fellow 

Column Editor: Brian Carter, MD | Neonatal/Perinatal Medicine, Bioethics; Neonatologist; Pediatric Bioethicist; Interim Director, Pediatric Bioethics | Professor of Pediatrics, University of Missouri-Kansas City School of Medicine

Keeping a secret can be morally burdening and distressing, because there is unspoken pressure to not discuss “the secret” with the person that it affects the most. Unfortunately, clinicians who provide care for children often encounter situations where parents request to conceal their child’s diagnosis or prognosis from the patient. In the recent October American Academy of Pediatrics (AAP) publication, Taub and Macauley highlight the importance of truth-telling or veracity, the act of providing thorough, accurate and comprehensive information to the patient in pediatric care.^1,2 Telling the truth is rooted in the principle of respect for persons, which contends that even people who “cannot legally make their own decisions,”³ such as children, deserve respect. In pediatrics, abiding by the values of veracity is fundamental to foster a trusting relationship between the patient, parents and clinicians. However, deciding to tell the truth can be ethically challenging when there is no certainty that disclosure of the diagnosis or prognosis is in the child’s best interest.⁴ In the United States, physicians typically do not want to override parents’ medical decisions and choices for their child,⁵ but parents’ requests to withhold information from the pediatric patient can have difficult repercussions.

There are several reasons why parents may request to withhold their child’s diagnosis or prognosis from them. Often, it is a well-intentioned desire to protect the child from any psychological or emotional burden. Sometimes it is due to sociocultural beliefs such as religion. And sometimes parents believe that if their ill child knows their diagnosis or prognosis, they may lose motivation to keep fighting or may become non-compliant with treatment plans.²

However, withholding the truth of a child’s diagnosis or prognosis, particularly for a serious illness, can impede development of the child’s autonomy and important skillsets, such as decision-making.² With a few exceptions, until they turn 18, children are legally considered to lack the full capacity to make medical decisions. Therefore, parents are given considerable liberty, as surrogate decision-makers, to make medical decisions on behalf of their child. Nevertheless, according to the AAP, clinicians should make conscious efforts to seek assent from children, to honor their growing autonomy. If their age and maturity permits, children should be provided with developmentally appropriate knowledge and information about their diagnosis or prognosis, to allow them to practice their autonomy and to help them prepare for treatments.

The AAP also insists that children deserve an opportunity to comprehend their health care and advocate for themselves. With guidance from skilled clinicians and input from parents, all children, regardless of age or developmental capacity, deserve to be respected, engaged and empowered to participate in their medical care. Parental requests of nondisclosure may cause the child to live in fear and anxiety—the very emotional burdens that the parents were trying to avoid. Studies have revealed that children unaware of their diagnosis experience no less distress and anxiety than those who are aware.^6,7 An understanding of their diagnosis or prognosis can help foster long-term coping skills and increase compliance with treatment plans early on.

Veracity in health care is not absolute and is allowed considerable flexibility. However, this flexibility also fosters opportunities for deception within health care and can compromise clinicians’ professional integrity.² Clinicians who decide to follow the parents’ request may reinforce the model of paternalism, which justifies superseding the child’s autonomy because “parents/clinicians know best.” Furthermore, nondisclosure does not guarantee that the child will never discover their diagnosis or prognosis. Therefore, not informing the patient may foster distrust in their clinicians or the health care system in general. A child who discovers that truthful information has been withheld may become nonadherent with treatment plans and fail to inform their clinicians of important clinical changes.

To appropriately manage these ethically challenging situations, the AAP recommends that clinicians seek to understand why the parents are requesting nondisclosure. Clinicians should also attempt to inform the parents of the benefits of disclosure and ensure that parents understand that disclosure will occur as a process. In addition, clinicians could compromise with parents and temporarily honor the nondisclosure but inform them that they must disclose within a time frame. Fully informing a child of their diagnosis or prognosis has been known to cause greater patient satisfaction, better health outcomes, decreased anxiety levels, increased feeling of being in control of their health, and more.^8,9 Therefore, parents and clinicians should be encouraged to tell pediatric patients their diagnosis and prognosis. After consideration, clinicians and parents may sometimes decide that it is best to inform the child together.

References:

1. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 8th ed. Oxford University Press; 2019.
2. Taub S, Macauley R; AAP Committee on Bioethics. Responding to parental requests for nondisclosure to patients of diagnostic and prognostic information in the setting of serious disease. Pediatrics. 2023;152(4):e2023063754.
3. Marron JM, Kennedy KO. Telling the child: ethics of the involvement of minors in healthcare decision-making and in considering parental requests to withhold information from their child.” In: Nortjé N, Bester JC, eds. Pediatric Ethics: Theory and Practice. Springer; 2021:127-141. The International Library of Bioethics; vol. 89. doi:10.1007/978-3-030-86182-7_8
4. Limb R. Non-disclosure requests by parents: who should decide? A legal and ethical framework. Med Law Int. 2019;19(1):62-77. doi:10.1177/0968533219837692
5. Marron JM, Jones E, Wolfe J. Is there ever a role for the unilateral do not attempt resuscitation order in pediatric care? J Pain Symptom Manage. 2018;55(1):164-171. doi:10.1016/j.jpainsymman.2017.09.006
6. Cole CM, Kodish E. Minors’ right to know and therapeutic privilege. AMA J Ethics. 2013;15(8):638-644. doi:10.1001/virtualmentor.2013.15.8.ecas1-1308
7. Claflin CJ, Barbarin OA. Does “telling” less protect more? Relationships among age, information disclosure, and what children with cancer see and feel. J Pediatr Psychol. 1991;16(2):169-191. doi:10.1093/jpepsy/16.2.169
8. Coyne I, Amory A, Gibson F, Kiernan G. Information-sharing between healthcare professionals, parents and children with cancer: more than a matter of information exchange.” Eur J Cancer Care. 2016;25(1):141-156. doi:10.1111/ecc.12411
9. Bringewatt EH. Delivering diagnoses: parents as translators and withholders of children’s mental health diagnoses. J Child Fam Stud. 2017;26(7):1958-1969. doi:10.1007/s10826-017-0709-5