Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

The Butterfly Program
Marcia Levetown, MD
Medical Director
301 University, Rt. 0566
Galveston, TX 77555-0566

Begun in 1994, The Butterfly Program is a comprehensive program of care, which seeks to meet the needs of children not expected to reach adulthood, and their families. The Butterfly Program will accept any child whose life expectancy is limited to childhood, regardless of current goals of care, the current setting of care, the family situation, or the ability to pay for services. The program provides the maximum amount of support to the broadest range of patients needing its services by using a unique referral process, providing comprehensive care, and assuring continuity of care.

When facing the death of a child, whatever the cause, there is ambivalence for the family as to what is best for the child. By allowing families to receive palliative or supportive care while still pursuing treatment to prolong the life of the child, The Butterfly Program obviates the need for families to make an either/or choice about these kinds of treatment. When life-prolonging treatment is no longer an option, the program's unique innovation, The Butterfly Room, provides a physical space that allows for a family-centered death for children who would otherwise die in the ICU.

In the Butterfly Room, children who are not eligible to go home due to dependence on ventilators or a continuous infusion of medication to maintain blood pressure, are transformed from patient back into child, sister, brother, niece, nephew, grandchild - loved one. Monitors and unneeded equipment are removed, measurement of vital signs and tests are stopped, and the family is encouraged to carry out the rituals that are meaningful to them. This may include dressing the child in clothing of the family's choosing, singing songs, offering prayers, holding, touching, and speaking to the child, as well as taking footprints, handprints, or locks of hair to create mementos for the family after the child has died. Staff explains what to expect after life support is stopped and offers the family choices as to whether to stay or leave while life support is withdrawn. Butterfly Program staff also discusses funeral arrangements, donations of organs and tissues, autopsy, and bereavement follow-up with families. When the family is ready, life-support is discontinued. The medical team is either present or nearby, according to the family's wishes. After the child has died, the medical team assists the family with the final goodbyes and with such practical needs as transporting the body to a funeral home or other location.

Spearheaded by the pioneering efforts of Dr. Marcia Levetown, The Butterfly Program is run collaboratively by the Hospice Care Team at the University of Texas Medical Branch at Galveston, and Houston Hospice. Prior to the implementation of the program, each of the two hospices cared for fewer than one child per year. Since its inception, The Butterfly Program has provided supportive care and bereavement follow-up for a total of 82 children and their families. The majority of the children served would not have qualified under traditional hospice admission criteria, yet were very appropriate for palliative and hospice care.

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For more on this topic and the work of Dr. Marcia Levetown, see Pediatric Palliative Care, Vol. 2. No. 2, 2000 in the Archives.