The Butterfly Program:
A Children's Hospice International Program for All-Inclusive Care for Children and their Families®(CHI PACC®)
The Butterfly Program is a pediatric palliative/hospice program that is based at The Children's Hospital in Denver, CO. The program has been in existence since 2002 and is a collaborative effort between The Children's Hospital Denver, Children's Pharmaceutical Services (CPS), Centura Home Care and Hospice, and the Porter Foundation.
Supportive Services and Comfort Care for Children, Ranging from Infants to Young Adults
Given the difficulty that parents may have in accepting the death of their child, the philosophy of the program differs from that of traditional hospice in that patients are accepted into the program with a life expectancy of 12 months or less with supportive/curative therapies such as chemotherapy accepted. The child does not have to have a DNR in place at the time of enrollment. The Butterfly Program also encourage ongoing collaboration with the child's primary care physician and care team during this difficult time.
Members of The Butterfly Program team include inpatient and outpatient coordinators, medical director, experienced homecare/hospice nurses, inpatient and outpatient chaplains, social workers, and bereavement coordinator. Dietary consultation as well as physical and occupational therapy support is also available.
The Butterfly Program initially began as an outpatient program. In Fall 2000 however, it was awarded a CHI PACC® grant from CHI. This grant has allowed the program to provide inpatient services and to offer patients ealy in the course of their disease the necessary medical social, and environmental interventions. The CHI PACC® grant has also allowed us to start an outreach program to hospices in Colorado outside the Denver metro area as well as in Wyoming and Montana which are two of the states that refer pediatric patients to The Children's Hospital, Denver. The outreach program offers on-site seminars on issues regarding pediatric palliative/hospice care. To date, The Butterfly Program has visited 8 different hospice programs with several more planned for 2003.
Educating of hospital medical and nursing staff and referring physicians around issues involving pediatric palliative/hospice care is also a goal of The Butterfly Program. In October 2002, the program sponsored a conference on pediatric palliative and hospice care aimed at caregivers.
CHI PACC® grantees are required to work with the state Medicaid office to submit a waiver which would expand pediatric palliative/hospice care services. Members of The Butterfly Program as well as the Director of Public Affairs at The Children's Hospital, Denver are currently involved in this endeavor, and expect to submit an application for a 1915c Home and Community-Based waiver in fall, 2005.
As a result of our ability to expand The Butterfly Program services via the CHI PACC® grant, the Butterfly program has enrolled almost 100 patients to date with the majority of these patients and families enrolled in the past 2 years. Additional services in the Denver area to assist families who have a child with a life-threatening illness or who have lost a child include:
- Bereavement Council and Bereavement Coordinator, Ms. Geri Nelson, MSW, The Children's Hospital Denver
- Judi's House - Denver based program providing counseling to children who have experienced a death in the family
- Hospice of Metro Denver - Denver based hospice program with an established pediatric program
For more information, please contact Dr. Brian Greffe, Medical Director, The Butterfly Program at 303-861-6787; Nancy King, RN, CPNP, Inpatient Coordinator at 303-764-8569; or Nancy Roth, MSW, Outpatient Coordinator at 303-561-5225. Information regarding patient enrollment or consultation can be obtained by calling 303-561-5601.
Modeled after the Children's Hospice International Program for All-Inclusive Care for Children and their Families®(CHI PACC®) and underwritten by congressional funding to Children's Hospice International for its CHI PACC® Program.