The Butterfly Program

from Practice Update, Summer 2005

By Sarah Bash, Physician Relations Representative, The Children’s Hospital

The Children’s Hospital Butterfly Program celebrates its sixth anniversary in June. The program is a collaborative effort between Centura at Home/Porter Foundation and The Children’s Hospital to provide palliative care to any person from infancy to adulthood that is facing a potentially life-limiting illness. The program can be initiated at any time regardless of a family’s ability to pay or a patient’s current treatment goals.

Palliative care is a service offered to support and to maintain the patient’s comfort and quality of life throughout the treatment of a potentially life-limiting condition. The Butterfly Program is available regardless of whether or not the goal of treatment is cure, stabilization or comfort care when cure or stability is no longer possible. The Butterfly Program consists of outpatient and inpatient teams who work with the patient, their family and medical team to ensure that the family’s wishes and the patient’s comfort and quality of life are being addressed.

Who Are the Members Of the Butterfly Team?

The Outpatient Butterfly team consist of an outpatient coordinator, two social workers, an outpatient chaplain and a bereavement counselor. Outpatient care is provided in conjunction with experienced pediatric home health agencies.

The Inpatient Butterfly team includes a physician, nurse practitioner, and two chaplains. These individuals work closely with the inpatient primary care team. Patient families can request a consultation with the Inpatient Butterfly team at any time during their stay at the hospital.

Since its inception, over 200 patients have been cared for by the Butterfly team. The program treats patients with a variety of life-limiting diagnoses including, cancer, neurodegenerative diseases, metabolic degenerative disease, muscular degenerative disorders. Patients receive treatment regardless of their ability to pay.

The Butterfly Program at The Children’s Hospital is funded through local grants and a grant from Children’s Hospice International. Brian Greffe, MD, Medical Director of the Butterfly Program explains, “we are working with Children’s Hospice International and the Colorado Department of Healthcare Policy and Financing to expand the benefits provided by Medicaid for palliative end of life care to pediatric patients. The current model for end of life care is more like the adult model which can be extremely difficult for families. It removes the family from the care model which does not work in the pediatric setting.