Module 3: Analyzing Ethical Challenges in Pediatric
End-of-life Decision Making

ACTIVITY 3: SEMINAR Honoring Parental Values When Benefits Are Marginal or Uncertain Description

Facilitators Guide   PowerPoint

When the prognosis for a child’s life and quality of life is poor and the benefits of a treatment are marginal or uncertain, medical ethics and U.S. law grant parents a great deal of discretion as to whether to pursue or forgo a proposed treatment. This 45-minute, case-based seminar is intended to help medical professionals become comfortable with the fact that caring individuals may make very different decisions on behalf of gravely ill children and that it is morally permissible for two patients with identical diagnoses and prognoses to receive very different treatment. The seminar explores ways in which medical professionals can help parents evaluate their treatment options in ways that respect the family’s values and preferences, acknowledging the difficulty that professionals may have when their own values are in conflict with the parents.

Learning Objectives

As a result of this seminar, participants will:

• Understand that ethics and law grant great discretion to parents when the prognosis for quality of life is poor and the benefits of proposed treatments are marginal and/or uncertain.
• Recognize that a child's current and likely future physical pain and suffering, cognitive functioning, and potential for human relationships are all appropriate factors to consider, when assessing the burdens and benefits of alternative treatment options.
• Recognize that caring individuals may make very different decisions on behalf of gravely ill children, and therefore cases that are medically the same or similar may be handled quite differently, depending on the family's values and goals of care.
• Acknowledge that family views are highly individualized and that professionals should not make assumptions about a family's values based on cultural or religious stereotyping.
• Work with parents to anticipate the likely illness trajectory and set appropriate goals of care in ways that respect their values and preferences.
• Help parents evaluate their treatment preferences in terms of the likely consequences of each choice.

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