The Butterfly Program
The Butterfly Program, sponsored by The Children's Hospital and Porter Hospice of Centura Health at Home, has filled a unique and relatively empty niche in the Denver metropolitan community since 1999. The program provides comprehensive pediatric palliative care, serving families with children who have been diagnosed with a terminal illness, and who are likely to have less than twelve months to live. Butterfly patients receive palliative and comfort care, either at home or in the hospital. Services are provided to any child with a potentially life-limiting or potentially terminal illness regardless of the current goals of their care, the setting within which the care is provided or the family's ability to pay for services.
The Butterfly Program allows for curative and palliative care to compliment one another to provide a comprehensive approach to end-of-life care for children and their families. Often times, in order to access the supportive services of a hospice program, families must relinquish the pursuit of curative or therapeutic interventions. The Butterfly Program bridges this gap, allowing children and their families to receive ongoing psychosocial and emotional support they need to enhance the quality of life remaining, while at the same time continuing to receive any aggressive and/or life-prolonging interventions they deem necessary.
The focus of the program is solely on the quality of life-for the patient, the family and the caregiver. As a patient-centered program, the needs, wants and desires of the patient and the family are at the forefront of the comprehensive care plan including pain management and symptom control. An interdisciplinary team meeting (IDT) is held once every two weeks to discuss the current medical, physical, psychosocial, emotional and spiritual care of each child currently enrolled in the program. The team includes the medical director, nurse, social worker, non-denominational chaplain, both inpatient and outpatient coordinators, a bereavement counselor and volunteer coordinator. Information on the child's overall condition is relayed via the nurse or medical director to ensure seamless communication and coordination of care with Butterfly team members and the primary care physician. Care plans are reviewed at each IDT meeting to ensure the goals, wishes and objectives are being honored. It is our hope that The Butterfly Program can provide comfort to families and allow them to treasure their time spent together.
The goals of The Butterfly Program are:
- To enhance the quality of life while strengthening the family
- To provide family-centered care, focused on individual needs and wishes for care and support
- To meet the physical, emotional and social needs of all members of the family
- To offer support and counseling to both the patient and family members