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The Language of
Bioethics (Glossary)

Objective

Goals

Required Reading

Clinical Vignette

Discussion Questions

Truth-Telling
(Disclosure) to
Children

Suggested Reading

References & Resources

Truth-Telling and the Pediatric Patient
Helping, Hurting, or Honoring Children?

Objective

To explore the physician's responsibility to the child as a patient when conveying information about their health status, care plans, and prognosis. And look at truth-telling as it pertains to informed consent in pediatrics.

Goals

1. List three reasons that truth-telling by a physician to a child might be considered "unethical" or unnecessary. What principles support these arguments?
2. List three reasons that truth-telling by a physician to a child might be considered beneficial. What principles support these arguments?

Required Reading

1. Introduction to Clinical Ethics. Fletcher, Miller, Lombardo, and Marshal.Second Edition.
   "Capacity in Older Children and Adolescents," p 77-78.
2. Committee on Bioethics, American Academy of Pediatrics. Informed Consent, Parental Permission, and Assent in Pediatric Practice. Pediatrics 1995;95:314-7.

Clinical Vignette

Truth in Time, excerpted from, In the Case of Children (Baylis & McBurney, eds) Toronto: The Hospital for Sick Children; 1993.

KG, a 16 year-old young lady was injured in a motor vehicle accident. Both of her parents were in the car at the time of the accident. Each of the three were transported from the scene to three different area hospitals in different ambulances--unconscious at the time. Unknown to the girl, her mother was pronounced dead at the scene. Her father is in an ICU at another hospital, but is stable.

Within 36 hours of admission to the ICU, KG is alert and out of danger. Her grasp of reality is appropriate and she is psychologically stable enough to be confronted with the terrible news of her mother's death, but her family insists that this information be withheld...at least until KG is discharged from the hospital and reunited with her father. The staff, especially some of the nurses, have spoken extensively about disclosure of the facts to KG with the extended family, in particular an apparent spokesperson who is KG's maternal uncle. But the uncle insisted on delaying such disclosure.

This disturbed some of the nurses who were being confronted with very pointed questions by KG, clearly indicating her awareness and anxiety. Tension arose as the staff was torn between covering up the truth to respect the family's wishes and respecting KG's need to know--and, hence, her being spared unnecessary anxiety. In the meantime, visiting family members were so bold as to wear mourning black! When her sister, having been told of her mother's impending funeral, arrived from afar, she did not even tell KG of her loss! Finally the nursing staff became insistent and gave the uncle an ultimatum. While initially trying to get the staff to tell KG (they refused) he finally responded...scarcely in time for KG to arrange for someone to bring flowers to her mother's funeral as her representative.

Discussion Questions

1. Does KG have the right to the truth? Do others (e.g. family members, health care professionals) have a duty to tell KG the truth?
2. Is it KG's "best interests" to be told the truth? Why? Why not?
3. When should family wishes be respected? Should the nurses have insisted that KG be told the truth or respected the family's wish?
4. Who is best suited for telling? What constitutes "best" in this sense... Efficiency? Humaneness? Compassion? From whose perspective should this be judged, or determined...the person being told or others?
5. When is disclosure by physicians a professional act? When might it simply be an act of mercy, thus taking the burden off of the family?

Substitute a younger child with a lethal diagnosis (HIV, terminal CF or cancer), for whom the parents request nondisclosure and work through these questions.

---

Tell all the Truth but tell it slant-
Success in Circuit lies
Too bright for our infirm Delight
The Truth's superb surprise
As Lightening to the Children eased
With explanation kind
The Truth must dazzle gradually
Or every man be blind-

Emily Dickenson

---

Truth-Telling (Disclosure) to Children

1. Two-fold purpose of disclosure:

• To inform patients properly
• To enable motivated patients to make informed decisions

2. Seven reasons for telling the truth

• Promotes the patient's well being
• Furthers the patient's life choices
• Emphasizes the importance of good communication skills
• Shows respect for persons
• Prevents having to lie
• Reduces the risks of harm to patients
• Reduces the physician's liability

3. Considerations in pediatric cases

• Age and cognitive development of the child– capacity to understand
• Assessment of "benefit" to child–need to know, and when
• Prerogative of parents to disclose or withhold information
• Determination of "therapeutic privilege"– withholding truth because of expected harm

4. Role of the pediatric health care professional–advocacy

5. Models of dealing with truth-telling to children (see Table)

A. Protector (based on beneficence; old model of paternalism)

B. Liberator (based on principle of autonomy)

1. Autonomy states that the individual:

• Knows his/her feelings best
• "Owns" his/her body and information about it
• Cannot defend him/herself against invasion of privacy without knowing truth
• Must bear the burden of consequences of decisions about them, and thereby is entitled to the truth

2. Respecting the autonomy of children presupposes that children are separate and distinct individuals, with a just claim to rights as full moral and legal "persons."

C. Educator (based on role of advocacy, respect of developing person, child's best interests)

Suggested Reading
Note: These articles can be found through Ovid and will require an ID and password.

1. Weir RF and Peters C. Affirming the decisions adolescents make about life and death. Hastings Center Report 1997; 27(6):29-40.
2. Ross LF. Health care decision-making by children: Is it in their best interest? Hastings Center Report 1997; 27(6): 41-45.

Medical College of Georgia

Please email comments, suggestions or questions to
Alan Roberts, aroberts@mail.mcg.edu.
August 05, 2002