tant services provided by the rest of the hospice or palliative care team go financially unrewarded. This reality creates something of a paradox. Hospice and palliative care organizations often recognize the importance of establishing a separate pediatric team because of the issues unique to pediatric end-of-life care. However, the ability to lose money on a pediatric program, due to poor reimbursement and high numbers of self-pay (usually meaning “no pay”) patients, puts undue pressure on smaller programs and necessitates high levels of private, philanthropic support. The responsibility for providing specialized pediatric palliative care services, therefore, generally falls on agencies that are large enough to absorb financial losses on the pediatric side. Such programs generally have as part of their mission statements a commitment to providing quality end-of-life care to children and do so primarily as a community service or as a marketing tool, neither of which is necessarily sustainable.
In addition to putting families and providers in a difficult situation, the current system is also internally inconsistent. It is acceptable for patients with third-party insurance and no financial eligibility for Medicaid to tap into Medicaid waiver programs for nursing support. However, Medicaid patients cannot have both, forcing families to choose between nursing support and hospice or palliative care services. The justification for this policy is to prevent duplication of services by excluding patients receiving waiver support from being eligible for the hospice benefit and other Medicaid programs. The “duplication of service argument” applies only to low-income patients and should be amended.
Even in situations where pediatric patients are enrolled “on the benefit,” the contracted rate of reimbursement pays for only a fraction of the services provided. Patients who are on “full benefit” are entitled to all of the core services modeled after the Medicare hospice benefit, but this does not include creative arts therapies (e.g., art, dance and movement, music, and drama therapies), nor does it provide bereavement services beyond 13 months, too short for many families who lose children to illness. Longer follow-up is unlikely to be reimbursed by any formal mechanism other than philanthropic support. Similarly, spiritual care, and child life and expressive therapy are particularly important in the pediatric arena as families struggle with a child’s terminal illness. The literature abounds with examples of the importance of art, music, and movement therapy for dying children and their families, particularly siblings, in supporting effective coping and grieving. Yet these disciplines are not reimbursed at all in the current benefit system.
Apart from the issues discussed above, pediatric palliative care faces an additional challenge. While no direct reimbursement for palliative care is available for any patient, adult palliative care programs are able to capture some revenue through physician billing under different codes (e.g., for