In addition to the physical, spiritual, and emotional effects of dealing with a terminal illness, there’s also the barrage of outside stressors – things like medical bills, insurance claims, and the logistics of taking care of healthy children while still being there for the one who is hospitalized or sick at home. There may also be other issues a family is facing such as employment concerns, legal problems, and transportation.
Siblings similarly need support during the child’s illness, during the terminal phase, and after death. Siblings often feel responsible in some way for the ill child’s fate, as well as feeling lonely and unloved by absorbed and exhausted parents. It’s not uncommon for siblings (and even some adults) at some point to think along the lines of, “If I didn’t get mad and wish he would leave Mom and Dad to me, he wouldn’t be gone.” For this reason, it’s important for caregivers to ask siblings (and the sick child) why they think the illness came about and then try to help them understand the real reason in an effort to relieve their guilt.
In some instances, the child and family will receive respite care – the aim of which is to provide both the child and the family members with a short break for up to 2 weeks. The child has a break from their usual surroundings and routines and the family from the often “around-the-clock” responsibility of caring for a child with a complex, life-limiting, or life-threatening condition.
The Butterfly Program, originally founded by the Children’s Hospital in Colorado and Porter Hospice of Centura Health at Home, and the University of Texas in Galveston, has filled a unique and relatively empty niche in the Denver metropolitan community since 1999. The program was initially designed to provide comprehensive pediatric palliative care, serving children and their families who had been diagnosed with a life-limiting illness. Since then, they’ve included care for children with chronic and terminal diseases.
At the University of Texas in Galveston, the Butterfly Program addresses not only the needs of the chronically ill patient but also the victims of sudden death. The program consists of home-based hospice and palliative care, hospital-based palliative care consultation, and a room (called the Butterfly Room) devoted to the care of children living with or dying from life-threatening conditions, including children who are the victims of trauma.
Although it has many uses, the Butterfly Room, located one floor above the pediatric critical care unit and on the same floor as the Cancer and Chronic Care Wards, most benefits families whose children die suddenly. There is space for over fifty people to be present. The room has rocking chairs, a living room area, a kitchenette, and a sitting alcove, in addition to sofas, a full bathroom, and the equipment to care for a child receiving any kind of life support. When children are transferred to the room, the agreement has been made to remove life-support systems that same day. Prior to transfer, all monitors are removed, all investigations and interventions that do not promote comfort are discontinued, and all equipment that is unnecessary for comfort is also removed. Families are invited to bring other family members, friends, neighbors, or any other supporters with them.
The reasons for the family and care team’s decision to stop attempts to prolong life are reviewed, questions are exhausted, and explanations of the day’s events are provided. Any rituals are encouraged, including bathing the child, dressing him or her in personal clothing, singing, chanting, crying, praying, and taking photographs and videos of the events. Handprints or hand-molds can also be made to preserve the day, if desired.
When everyone is prepared to let go, the parents are asked who they wish to be present at the time of the removal of life-support machines and who should be holding the child. Prayers may be offered as well as the comforting idea of seeing the child’s face once more without tape and tubes. Hospice personnel will provide bereavement assistance for as long as the family needs attention and care.
The Butterfly Program has successfully been transferred to other sites at University Hospitals in San Antonio, Texas (where it’s called the Mariposa Room), and Kansas City, Missouri (where it’s called the Delta Room). Another is being developed in Greenville, North Carolina. Unfortunately, reimbursement for this highly-valued care is nonexistent at this time.
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