Develop and promote a structure for communication between clinical staff and family, specifically including the child patient, who should be part of the decisionmaking process whenever possible. The goal is to set up the expectation that a child will be as fully informed as possible, so that when tough decisions come along, the child can participate. An example of this is the “Final Stage Conference” (Nitschke et al., 1997), used at the Children’s Hospital of Oklahoma since the 1970s, in which a consistent approach is employed at the time of a child’s cancer relapse to communicate essential information regarding disease status, prognosis, and care options. The child is routinely included in the discussion (with the parents’ permission), which is tailored to his or her developmental understanding. Available investigational and palliative therapies and expectations for the terminal course are described. In the experience of the authors, the Final Stage Conference has been effective at conveying essential information, enhancing participation of the child and family in reaching a sound decision, facilitating dialogue within the family unit, and maintaining the family’s trust.
Several disease- and treatment-related characteristics of children with cancer are relevant when considering discontinuing active therapy (Freyer, 1992). These include
the medical experience of the child,
the nature of pediatric cancer therapy,
the unpredictability of treatment responses,
parental and/or physician biases, and
the necessity of palliative care.
For children and adolescents capable of expressing their values and preferences, the use of “modified substituted judgment” (substituted judgment is a legal concept for surrogates’ making decisions for previously competent adults) is recommended for enacting decisions consistent with their wishes (Freyer, 1992). This means that parents can apply their child’s stated values when decisions are required. When combined with traditional guidelines for end-of-life decisions (such as benefit-burden analysis), the consistent application of these guidelines for children appears to enhance provider-patient or family communication. Clinical studies are required to confirm this.
Develop standards for decisionmaking capacity (including advance directives) in the pediatric population based on developmental level or