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Tay-Sachs, Canavan, GM1 and Sandhoff diseases

A Note About Insurance

The term "Hospice" is part of a philosophy of care, but it is also defined as  an insurance benefit.  It is important to clarify how this term is being used, and what the implications for care are for the individual child and family. There may be confusion about how the insurance benefit that is commonly used for adults can work for children. Because the needs of sick children are very different from those of ill adults, it is important to examine these issues and negotiate the best fit of needed services and reimbursement or payment strategies.

Depending on the type of palliative care program available, the addition of an in home hospice provider is often needed to allow for care to be delivered in the child's home, particularly if death at home is a goal for the family. It is extremely important for providers to explore options of care for with their patients and families which can include both hospice and palliative care services.