a child’s participation in well-designed clinical research as a case management option, and it is developing a palliative care “add-on” feature to offer as part of future benefits packages. The Premera program was designed to assist early access to hospice care, promote active case management, and encourage creative use of home care benefits. Both plans used a “decision-making tool” (developed by medical ethicists at the University of Washington) that provided a comprehensive framework for discussing all aspects of a child’s care and taking into account medical circumstances, family preferences and situations, quality of life, and financial issues. Challenges identified by the two health plans included early identification of children and families who might benefit from hospice care and changing the relationship with hospices from adversarial to cooperative. Cost and satisfaction data are still being collected and analyzed.

Blue Cross Blue Shield of Montana is participating in a multisite project, this one testing the Advanced Illness Coordinated Care model that was developed by the Life Institute and is described in its pediatric format in Chapter 6. This program is unusual because the plan will fund participation in the program of 120 people under age 65, whether or not they have coverage from the plan. The program is organized around six to nine home visits made by case managers to individuals who have a fatal diagnosis but do not meet hospice criteria. The case management services are paid for by the plan under a contract with the Life Institute. The plan anticipates that the discussions will lead to some cost savings based on advance care planning and avoidable hospitalization.

In addition, as one outgrowth of its involvement in community initiatives to improve end-of-life care, the Blue Cross Blue Shield plan (Excellus) in Rochester, New York, recently established payment for palliative care consultations by physicians certified in hospice and palliative medicine (BCBSRA, 2002). The plan also has established a program called CompassionNet aimed at children who meet one of the following criteria:

  • a diagnosis of a potentially life threatening illness,

  • two unplanned hospitalizations in the preceding six months (other than for asthma),

  • an acute exacerbation of a chronic illness that creates an extreme risk, or

  • a prognosis of three years of life or less.



The state–federal Medicaid program is a critical source of funding for services to low-income children. It covers large numbers of children with

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