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

Assessing Benefits and Burdens of Life-Sustaining Treatments


 Facilitators Guide   PowerPoint 

The purpose of this introductory seminar is to provide health care professionals with a conceptual framework for approaching difficult decisions about the use of life-sustaining treatments for neonates, children and adolescents. The framework calls for an assessment of the benefits and burdens likely to be associated with different care plans. In discussing benefit, participants are encouraged to think in terms of the immediate assistance the proposed treatment can offer and also in terms of the longer-term outlook for the child's life. In addition, participants are encouraged to think beyond strictly physiological benefit to an assessment of the benefits the treatment may offer in the context of the child's long-term prognosis and expected quality of life.

In this session, the focus is on helping participants become comfortable with the conceptual framework and able to apply it to a range of cases. In this early process of learning a new framework, we purposely avoid in-depth analysis of specific cases. Learning Activity 3, "Honoring Parental Values when Benefits are Marginal or Uncertain," provides an opportunity for more in-depth ethical analysis of individual cases.

Learning Objectives

As a result of this seminar, participants will:

  • Recognize that there are circumstances under which it is morally permissible to forgo life-sustaining treatments in gravely ill children.
  • Distinguish and provide ethical justification for cases in which treatment is clearly indicated as in the child’s best interest, where the benefits of treatment are marginal or uncertain, and where treatment is likely to be nonbeneficial or even harmful.
  • Recognize the moral obligation to share decisions about the care of gravely ill children with parents, especially when benefits are marginal or uncertain.
  • Recognize that when assessing benefits it is appropriate to consider not only physiological benefits but also the overall benefits and burdens that the treatment may have on the child’s future life.
  • Identify the range of factors that may be considered when assessing burdens and benefits, including the child’s likely degree of pain and suffering, cognitive ability, and the child’s potential for human relationships.

[Go to Activity 1]
[Go to Activity 3]
[Go to Activity 4]
[Go to Activity 5]