Nonprofits, Philanthropy, and Pediatric End-of-Life Care—A Gap to Be Filled

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Death. A user-friendly guide. / gniliep

January 5, 2017; Slate

An estimated 41,000 children die in the United States each year. Most would qualify for palliative care services such as hospice and pain management. Unfortunately, end-of-life care for children is sorely lacking in the U.S.

The idea itself is fairly new, with the first freestanding center having opened slightly more than a decade ago. Although the majority of hospice centers will accept children and young adults, their treatment is modeled for adult patients, not children. While adult and pediatric palliative care share some similarities, children’s needs are often more complex, requiring services such as art therapy, play therapy, and child behavioral specialists. Furthermore, families facing the death of a child are in a much different situation emotionally than those dealing with the death of an adult relative.

One of the largest obstacles to obtaining appropriate pediatric palliative care is, not surprisingly, funding. There appear to be two primary funding issues. First, not all services that are needed for palliative or end-of-life care are covered through insurance. For instance, family respite is a necessary component of a well-rounded program but is typically not covered under insurance plans. Second, while palliative care and hospice differ in important ways, payers typically bill both services under “hospice.” Thus, palliative care services that go beyond the scope of hospice are not covered. A good example of this would be the longer duration of stay for palliative care as opposed to hospice, which is defined as six months or less. Palliative care can begin early on in treatment and may last much longer than six months, particularly as the nature of childhood illnesses means that accurate prognoses are often difficult to come by.

Even if families are able to pay for services through some combination of funding, in the United States, there remains a lack of information regarding what palliative care even is. The term “palliative care” is often associated with adults and end-of-life care. Parents may hesitate to enlist such services for their child for fear it means they are “giving up.” Thus, the emphasis in medicine is to pour resources into treatment and cures. However, this can lead to longer hospital stays, which come with their own issues. Beneficial treatments like pain management, therapy, and family counseling, which can make a child more comfortable and thus contribute to recovery, fall by the wayside. Lastly, without undergoing special training, physicians are often are not educated in palliative care and may not know when it is appropriate to refer pediatric patients; some may even try to take on this role themselves.

Nonprofit organizations have often filled gaps in the treatment system where for-profit and public entities have failed. By focusing on just two areas—funding and education for both patients and providers—nonprofits can ensure children in the United States receive quality services when they most need them.—Sheela Nimishakavi