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When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families (2003)
Board on Health Sciences Policy (HSP)
Institute of Medicine (IOM)

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. "8. Ethical and Legal Issues." When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press, 2003.

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ues, but they may also uncover and address issues of trust, fear, anger, or other emotions, including personality conflicts.

Consensus Building Techniques

At the request of the American College of Physicians–American Society for Internal Medicine (ACP-ASIM), three experts in adult palliative care proposed a consensus-based approach to decisionmaking for those who are unable to make decisions about their own care (Karlawish et al., 1999; see also Hoffman, 2001). The authors also offer suggestions about how to handle situations when discussion has not resulted in a consensus about the care of a patient who cannot make decisions about his or her own care. These suggestions, which should be tested further, include the following:

  • postponing decisions and recommending that those involved take more time to think about and discuss concerns and goals;

  • seeking interim steps such as a time-limited trial of a medical intervention rather than insisting on an all-or-nothing decision;

  • continuing to identify and understand each participant’s views on the goals of medical care for the patient and the care options for achieving those goals;

  • bringing in a trusted third party such as an ethics or palliative consultant or religious adviser; and

  • avoiding language or actions that personalize conflicts, turn decisionmaking into a power struggle, or attack the religious, cultural, or other values of the participants.

Regardless of the specifics, discussion strategies place a premium on communication skills and advance care planning as discussed in Chapter 4. Poor communication skills as well as failures of empathy and compassion are undoubtedly behind some of the disputes with parents that require interventions of the kinds discussed here. Based on the guidance developed from the ACP-ASIM, Table 8.1 presents examples of discussion steps and illustrative language that can be employed to guide discussion toward consensus. Because the original guidance focused on adult care, the text has been slightly altered. Again, further assessment of these strategies is desirable.

Discussions of the kind outlined in Table 8.1 take time, which is often in short supply as clinicians respond to health systems, hospitals, hospices, private insurers, Medicaid programs, and other state programs that are trying to control costs. Nonetheless, investments in careful initial communications with families can help limit subsequent investments in discussions

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