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Hospice Benefits for Terminally Ill Children

  • Published: 2010-09-13 (Revised/Updated 2011-01-25) : Author: National Hospice and Palliative Care Organization
  • Synopsis: Guidance on New Hospice Benefits for Terminally Ill Children Hailed by Hospice and Palliative Care Community.

Main Document

Guidance on New Hospice Benefits for Terminally Ill Children Hailed by Hospice and Palliative Care Community.

The families of dying children who are covered under Medicaid or the Medicaid expansion Children's Health Insurance Program (CHIP) will no longer face the choice of stopping curative treatments in order for their terminally ill child to receive quality end-of-life care from hospice.

The provision in The Patient Protection and Affordable Care Act requiring state Medicaid programs to allow children with a life-limiting illness to receive both hospice care and curative treatments has been widely applauded by the hospice and palliative care community. In an important step to implement the law, the Centers for Medicare and Medicaid Services issued a letter of guidance on Thursday, September 9, 2010.

"This provision is a very important step forward for children with life-threatening illness. No longer will families need to make an agonizing choice to give up cure-directed treatment in order to receive the multiple benefits offered through a comprehensive hospice program," said Sarah Friebert, MD, Director of the Haslinger Division of Pediatric Palliative Care at Akron Children's Hospital.

J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization, remarked, "NHPCO has been a longtime advocate for the provision, previously working with Senators Jay Rockefeller (D-WV)and Susan Collins (R-ME) to include the language in their Advance Planning and Compassionate Care Act."

Throughout the various stages of health care reform deliberations, NHPCO went on record as supporting the inclusion of the pediatric concurrent care provision and actively lobbied for its continued inclusion in the final version of the legislation.

The law does not change the criteria for receiving hospice services. In order to qualify for the hospice service in either Medicaid or CHIP, a physician must certify that the eligible person is within the last six months of life.

In the letter issued by CMS, Cindy Mann, federal Medicaid Director, wrote, "We believe implementation of this new provision is vitally important for children and their families seeking a blended package of curative and palliative services. This provision will increase utilization of hospice services since parents and children will no longer be required to forego curative treatment."

"Care for children and families facing serious illness and death are an important population that should not be overlooked," noted Schumacher. "This law is the right thing to do for families facing the tragedy of a dying child."

Friebert further added, "We have further work to do to secure reimbursement for services for children with chronic, complex and/or life-threatening illness who do not qualify for hospice, and need the same protection to receive concurrent palliative care and cure-directed therapy."

To further support the care of young people with serious and life-limiting illness, NHPCO and the Children's Project for Palliative/Hospice Services (ChiPPS) developed and published The Standards of Practice for Pediatric Palliative Care and Hospice and released a report "Facts and Figures on Pediatric Palliative Care and Hospice." Additionally, the first module of a series of ten online courses on pediatric palliative care was launched on NHPCO's web-based E-Online education portal.

Learn more about the Pediatric Standards, ChiPPS, or download the facts and figures report at

Informational brochures for parents of seriously ill children (available in English and Spanish) are available free-of-charge on NHPCO's Caring Connections website at or by calling the Helpline at 1-800-658-8898

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