The committee recognizes the cost pressures on employers, private health plans, and state Medicaid programs, particularly during periods of recession or slow economic growth. Because Medicaid covers many children with serious chronic health problems, the cost to states of even limited coverage expansions must be considered. Thus, the Centers for Medicare and Medicaid Services should develop estimates of the cost of adopting these recommendations in Medicaid, taking into account the possibility of avoided costs (e.g., hospitalization related to inadequately managed care at home). The analyses being undertaken for the demonstration projects described earlier in this report and in Appendix H should be helpful.

Recommendation: In addition to modifying hospice benefits, Medicaid and private insurers should modify policies restricting access to other palliative services related to a child’s life-threatening medical condition or death. Such modifications should

  • reimburse the time necessary for fully informing and counseling parents (whether or not the child is present) about their child’s (1) diagnosis and prognosis, (2) options for care, including potential benefits and harms, and (3) plan of care, including end-of-life decisions and care for which the family is responsible;

  • make the expertise of palliative care experts and hospice personnel more widely available by covering palliative care consultations;

  • reimburse bereavement services for parents and surviving siblings of children who die;

  • specify coverage and eligibility criteria for palliative inpatient, home health, and professional services based on diagnosis (and, for certain services, severity of illness) to guide specialized case managers and others involved in administering the benefits; and

  • provide for the Centers for Medicare and Medicaid Services to develop estimates of the potential cost of implementing these modifications for Medicaid.


To implement the recommendations related to improved benefits for palliative, end-of-life, and bereavement care, eligibility criteria must be defined. Federal officials should work with state Medicaid officials, pediatric organizations, and private insurers to define diagnosis and severity criteria to establish children’s eligibility for pediatric palliative care and hospice services and family members’ eligibility for bereavement services. In addition, federal officials should also take the lead in examining the appropri-

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