Under federal Medicaid requirements, hospice is an optional benefit for adults. Most state Medicaid programs include hospice, but programs in Connecticut, Nebraska, New Hampshire, Oklahoma, and South Dakota do not (Tilly and Weiner, 2001). For children, however, the 1989 EPSDT amendments cited earlier include hospice as a covered service. Therefore, children should have coverage for hospice even in states that do not provide hospice coverage to adult Medicaid enrollees.
The Medicaid hospice benefit follows the Medicare benefit in defining covered services, payment categories, and payment rates. Like Medicare enrollees, Medicaid enrollees must be certified as having a life expectancy of six months or less and must agree to forgo curative treatment (interpreted to include life-prolonging therapies) of their terminal illness in order to be eligible for the hospice benefit (MedPAC, 2002). Even when children are enrolled in Medicaid, hospice services may not be covered because the physician is unable or reluctant to certify a six-month prognosis. As discussed in Chapter 4, determining prognosis is even more difficult and uncertain for children than for adults. Also, families seeking assistance from hospice may still want the option of potentially life-prolonging interventions for their child. Medicaid home health benefits (discussed below) may cover some but not all of the services provided by hospices.
Although Medicaid beneficiaries have to forgo curative care to receive hospice benefits, federal law no longer requires that Medicaid beneficiaries receiving hospice care give up other supportive Medicaid services. Specifically, the Omnibus Budget Reconciliation Act of 1990 (P.L.101-508) allows “payment for Medicaid services related to the treatment of the terminal condition and other medical services that would be equivalent to or duplicative of hospice care, so long as the services would not be covered under the Medicare hospice program. This means that Medicaid can cover certain services which Medicare does not cover” (HCFA/CMS, 2001b).
Nonetheless, it appears that some state Medicaid programs (e.g., New York) may force families to choose between hospice and more benefits for home and community-based services (Tilly and Weiner, 2001). Hospice personnel have repeatedly mentioned this as a concern in discussions with committee members and staff. The apparent divergence between federal policy and some state practice requires further attention as an inappropriate barrier to needed services for dying children.
In addition, Huskamp and colleagues (2001) have noted access problems for some high-cost hospice patients (e.g., those requiring expensive pain medications, blood transfusions15) enrolled in Medicare. Providers