Nevertheless, gaps and other problems in the financing of palliative and end-of-life services contribute to access and quality concerns for adults and children living with life-threatening conditions. Complete lack of insurance is an obvious problem. Yet, even when a person is insured, coverage limitations, financing methods and rules, and administrative practices can create incentives for undertreatment, overtreatment, inappropriate transitions between settings of care, inadequate coordination of care, and poor overall quality of care. Low levels of payment to providers can discourage them from providing certain treatments and from treating some patients at all.

Obtaining a good picture of financing for palliative and end-of-life care services for children is difficult. Unlike virtually all elderly Americans, children are covered not by a single insurance program (Medicare) but, instead, by thousands of private insurers and a multitude of state Medicaid and other public programs that have differing eligibility and coverage policies. These policies are poorly or not conveniently documented and constantly changing, so such information as is available on private health plans and Medicaid programs may be incomplete or out of date.1 Further, because death in childhood is relatively uncommon, data from surveys (e.g., of hospice and home care services) may not provide reliable estimates. Insofar as available data permit, this chapter

  • describes payment sources for palliative, end-of-life, and bereavement care for children and their families;

  • reviews relevant coverage and reimbursement policies for private health plans and Medicaid; and

  • recommends directions for changes in coverage and reimbursement policies.


For those covered by Medicare (particularly the almost 90 percent who are enrolled in the traditional fee-for-service Medicare program), fairly good claims information is available about payment for most kinds of hospital, physician, and other covered services. In addition, the Current Beneficiary Survey tracks service use, out-of-pocket payment, supplemental coverage, health status, and other information that provides a broader picture of health care use and spending for Medicare beneficiaries. These data have been analyzed to determine the share of Medicare spending accounted for by care during the last six months of life, assess the proportion of expenses for different kinds of health services not paid by Medicare, and evaluate beneficiary use of hospice and other services. No such data are available for children.

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