will receive care paid for or provided by “safety-net” providers, private philanthropies, and other sources, but some will go without needed services. The diverse sources of payment for children’s health care make it difficult to obtain a comprehensive picture of coverage, reimbursement, and other problem areas, but certain general problems are evident.

For insured children and families, coverage limitations, provider payment methods and rules, and administrative practices can discourage timely and full communication between clinicians and families and may restrict access to effective palliative and end-of-life care. Low levels of payment to providers can make it difficult for health care professionals, hospitals, and hospices to provide certain treatments or even accept some high-cost patients. At the same time, financing policies can promote excessive use of advanced medical technologies and inappropriate transitions between settings of care. In addition, as employers or states restructure their health insurance programs, families are often subject to changes in health plans, provider networks, or terms of coverage (e.g., reduction in home health care benefits). These changes may disrupt continuity of care, including relationships with trusted providers.

Most private health plans, particularly those sponsored by large employers, appear to cover hospice care to some extent, as do nearly all state Medicaid programs. Medicaid programs and some private health plans follow Medicare in limiting hospice care to patients who are certified to have a life expectancy of six months or less and are willing to forgo further curative or life-prolonging care. Such requirements are particularly trouble-some for children whose life expectancy is uncertain or whose parents cannot face relinquishing efforts to save or extend their child’s life.

Recommendation: Public and private insurers should restructure hospice benefits for children to

  • add hospice care to the services required by Congress in Medicaid and other public insurance programs for children and to the services covered for children under private health plans;

  • eliminate eligibility restrictions related to life expectancy, substitute criteria based on a child’s diagnosis and severity of illness, and drop rules requiring children to forgo curative or life-prolonging care (possibly in a case management framework); and

  • include outlier payments for exceptionally costly hospice patients.

In addition to targeting restrictive hospice coverage, this recommendation also is directed at limitations in the current hospice per diem payment method. Research and experience suggest that patients with particularly high-cost needs are often denied hospice or are accepted on the condition

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