is even further behind. Some examples of information required by families to make good decisions include understanding the diagnosis and prognosis; the likely effects of the disease on the patient; other relevant physical or emotional problems likely to impact the course of illness; other symptoms likely to occur; what death will look and be like with and without artificial interventions; uses and interactions of medications; the availability of pharmacologic and nonpharmacologic interventions to ease suffering; the availability of professional and nonprofessional resources to aid the family; physical modifications and facilities to make home or transportation more accessible; and what changes in functional status are likely to occur. In short, families need a complete appreciation of the effects of a life-threatening illness on the physical, psychological, spiritual, and practical dimensions of care.

An additional educational need regards advance directives. With adults, there is at least a chance that end-of-life wishes will have been considered before being faced with a life-threatening illness, but this almost never occurs in the pediatric setting. Most pediatricians and even pediatric sub-specialists are not skilled in discussing advance directives. Research clearly demonstrates that patients and families prefer to be guided in these discussions by practitioners they trust (Frager, 1996; Whittam, 1993). Resources to make decisions concerning withdrawal of life-sustaining treatment (including nutrition and hydration), and covering principles of palliative care and issues of medical futility, are not currently available to pediatric patients and their families. Although there are books available to parents describing leukemia and other cancers, there is not much available to families to help prepare them for the medical and psychosocial details of the death of their child.

Next Steps
  • Develop protocols for use by interdisciplinary teams to explain disease and prognosis in terms that families and patients can understand. Content of discussions should be spelled out and be accompanied by delivery of the material in written form for later review.

  • Develop materials for child patients at every developmental level and their families with disease-specific information, prognosis, palliative care terminology and options, and clinical trial terminology and options.

  • Develop resources that detail expected physical changes toward the end of life.

  • Involve parents and older adolescents (when appropriate) in national organizations developing policy for pediatric hospice and palliative care standards and reimbursement.



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