In the Spotlight
The Patient Protection and Affordable Care Act (ACA), now commonly referred to as "Obamacare" by both critics and many supporters, was signed on March 23, 2010. One provision in the law, Section 2302 and termed the "Concurrent Care for Children" Requirement (CCCR), has received little public attention but can make a huge difference for terminally ill children and their families. This provision is also referred to as the "concurrent hospice benefit" for pediatrics. Previously, when a doctor believed that a child likely had six months or less to live, that patient could be referred to hospice to allow the patient to live as well as possible at home with family and friends. The "catch" for families was that if they accepted hospice services, they had to say "no" to treatments and therapies intended to prolong life. Quality of life had to be the goal of services, not quantity of life. In many ways this made no sense, however, as parents understandably want both quality and quantity of life for their children (and family members, friends and themselves). When our children have life-limiting conditions, we want life to be as good as it can be and as long as it can be and we try to keep the appropriate balance between the two goals.
The old hospice payment guidelines didn't allow this balance. In practical terms, the old either-or rules led to situations such as these:
- A child requires a ventilator to live and receives in-home nursing to provide the level of care that goes along with a home ventilator. If the child's life expectancy is or becomes less than six months, the child could receive hospice services for additional support for the child and the family. If the parents choose hospice, however, they will lose their in-home nursing support. Hospice and in-home nursing support for the ventilator could not be provided at the same time.
- A child has cancer that keeps coming back despite the best treatments available. Hospice would be appropriate for the child and family, but there is a new experimental treatment with limited side effects which might give the child more time to live and live acceptably well. If the family chooses hospice, they can't try the new treatment to see if it will help. If they try the new treatment, they lose the opportunity for hospice services and it will be more likely that the child will die in the hospital rather than at home where the child and family may prefer.
With the new concurrent hospice benefit, patients under age 21 and their families no longer have to face the wrenching dilemmas described above. A child with a home ventilator and in-home nursing can receive hospice in addition to the services already being provided and a child with cancer that's medically considered "incurable" can receive hospice along with treatments that may extend life. This is a remarkably positive and sensible benefit for pediatric patients and their families.
How state Medicaid programs implement this new concurrent hospice benefit differ. If you are not aware of this benefit and how it works in your state, contact your state's Medicaid program. For more information about this benefit, please see this document from the National Hospice and Palliative Care Organization, http://www.nhpco.org/sites/default/files/public/ChiPPS/Continuum_Briefing.pdf.
While this policy change is a great benefit to children qualifying for hospice services, it does nothing to change the similar dilemmas faced by adults and their families where an adult qualifies for hospice but would like to continue life-prolonging treatments while receiving hospice services. Research has shown that patients who get concurrent hospice benefits can live longer and better while not increasing the financial burden on the healthcare system (financial costs per patient generally are less with concurrent care). Hopefully the compassion and sensibility that has brought concurrent care to children will one day soon also be offered to adults facing decisions at the end of life.
For those living in Arkansas: Arkansas Medicaid began implementation of this new benefit on January 1, 2013. PalCare, the pediatric palliative care program at Arkansas Children's Hospital, has had good experiences accessing this benefit for qualified patients and their families. Please email
email@example.com or call 501-364-6658 to contact the PalCare program or contact the Hospice and Palliative Care Association of Arkansas,
www.hpcaa.org, if assistance accessing this benefit is needed.