Cancer is the leading cause of death in North Carolina. This issue of the NCMJ discusses cancer prevention, screening, treatment, and survivorship; disparities in incidence and mortality; and ethics of clinical trials. Highlighting the importance of comprehensive data for understanding cancer, original articles in this issue address how medical homes can reduce health care utilization among breast cancer patients and how distance to care affects receipt of radiation therapy.
Pediatric Oncology and Palliative Care
Overall, we now cure 70% of the children who are diagnosed with cancer, and in the 30% of cases that are still not curable, we can almost always add time to the child’s life. As our ability to cure cancer has improved, we are now paying increased attention to the goal of avoiding or alleviating the suffering associated with cancer and its therapy. Risk stratification aims to avoid undertreatment of children with high-risk cancers and to avoid overtreatment (with all of the associated side effects of therapy) of children with lower-risk cancers. This goal has become an important part of designing treatment protocols over the past 15 years.
Whether or not a child will be cured, we know that all children with cancer suffer, as do their families. Pediatric oncology is committed to curing cancer, but palliative care is committed to improving a child’s quality of life, irrespective of the potential for cure. Oncology and palliative care are thus twin endeavors, both of which seek what is best for a child and his or her family . Within the 2 broad categories of curing disease and alleviating suffering, there are many specific goals unique to each patient. Palliative care seeks to relieve the physical, emotional, social, and spiritual distress produced by complex, chronic, or life-limiting conditions; to assist in making difficult decisions and setting goals; and to enhance children’s quality of life .
More than a decade has passed since the American Academy of Pediatrics  and the Institute of Medicine of the National Academies  called for the integration of palliative care into ongoing medical management of life-threatening illnesses (such as cancer) in children, from diagnosis to the end of life. Since these calls were issued, models of integrated pediatric palliative care have been developed in which curative therapy and palliative care coexist. For children whose lives are going to be short, adding a few months of good-quality life can be transformative. Adding 6 months to the life of a child who would otherwise have died at 3.5 years of age is extending his or her life by nearly 15%.
To help maximize both quantity and quality of life for children with terminal illnesses, the Patient Protection and Affordable Care Act of 2010 contains the Concurrent Care for Children Requirement . This provision states that palliative and hospice care services must be reimbursed if they are administered to a child with a life-limiting illness who is eligible for Medicaid or the Children’s Health Insurance Program, even if the child is still receiving disease-modifying treatments. In this context, concurrent care is defined as the introduction of palliative care principles at the time of a life-threatening diagnosis, with increasing support over time as the disease progresses; this approach includes a multidimensional assessment to identify, prevent, and alleviate suffering . At the end of life, the model allows for hospice services without requiring the patient to stop all traditional medicine, which may include antibiotics, transfusions, and palliative chemotherapy.
Such models have been supported by studies of adult patients that have demonstrated that palliative care prolongs life , is effective in improving quality of life and mood , and decreases caregiver burden [9, 10]. In 2012 the American Society of Clinical Oncology released a provisional clinical opinion, based on available evidence from clinical trials, advocating for the early integration of palliative care into standard cancer treatment for malignancies with high symptom burden . However, many challenges exist in the implementation of these integrated models, including the pressure to reduce overall health care costs, lack of necessary tools and skills on the part of health care providers, and the mistaken tendency to equate palliative care with end-of-life care.
The Concurrent Care for Children Requirement has been challenging to implement in many states, including North Carolina. Despite the fact that palliative care is now widely recognized as a critical part of excellent care for children with life-limiting diseases such as cancer, patients continue to receive this care very late in their illness trajectory [12, 13]. In 1 study, the median time between palliative care consultation and death was only 8 days . However, as evidence grows that introducing palliative care early in the course of therapy benefits children with cancer, and as the medical culture becomes more aware of the evidence demonstrating the value of such an approach, pediatric oncology and palliative care will continue to become more integrated. This will benefit children, their families, and the staff members who care for them.
Potential conflicts of interest. R.B. has no relevant conflicts of interest.
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Ray Barfield, MD, PhD associate professor, Department of Pediatrics, Duke University, Durham, North Carolina.
Address correspondence to Dr. Ray Barfield, Duke University, 2 Chapel Dr, 0024 Westbrook Bldg, Durham, NC 27708 (firstname.lastname@example.org).