Families of dying children with Medicaid coverage or Children's Health Insurance Program (CHIP) will no longer have to choose between aggressive therapies and comfort care. In the past, families have had to choose to stop aggressive or curative treatments to receive quality end-of-life care from hospice. Now, a provision in The Patient Protection and Affordable Care Act requires state Medicaid programs to allow children with a life-limiting illness to receive both hospice care and aggressive or curative treatments.
Eligibility for hospice care will not change: to be eligible for hospice care, children will still have to have a life expectancy of six months or less. But dying children and their families no longer have to feel like they have to give something up to get top notch care.
The provision in the Patient Protection and Affordable Care Act is widely applauded in the hospice and palliative care community. The National Hospice and Palliative Care Organization (NHPCO) was instrumental in getting the provision included in the final act and continues to support and educate hospice agencies in offering hospice services to children. The new provision may mean a large increase in the pediatric hospice population and many hospice agencies are preparing for younger patients. In their efforts to support pediatric hospice care, 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 created a series of ten online courses on pediatric palliative care that can be found on NHPCO's web based education portal.
As more children and their families choose to spend the child's final days at home, this is a critical step toward ensuring they get the care and support they need.
