When staff at Valley Home Care in Ridgewood, N.J., created the Butterflies Program, it was key to select nurses who had training and interest in working with seriously ill children in a home environment. The program offers comprehensive home care focused on pain management for infants and children diagnosed with life-limiting or life-threatening illnesses.
“This program was created because we found the families of some of our sickest children wanted them home and we needed nurses who could work with this challenge,” said Mary Ann West, RN, MSN, CHPN, Butterflies Program coordinator. “So we recruited staff and began formalized training for our nurses.” A nurse at Valley for 20 years, West said she is proud to have been a part of the process when the Butterflies Program launched in 1998.
Rose Marie Ranuro, RN, MSN, CPNP, director of clinical services for Valley Home Care, shares the same pride and emphasizes the Butterflies Program is unique in many ways. “We are the only ones anywhere in our surrounding span with such a full dedicated program offering a team approach for such serious needs in the home,” said Ranuro, who has been a nurse since 1981 and with Valley Home Care since 1990.Rose Marie Ranuro, RN
Both nurses said the Butterflies Program is successful because nurses have led the multidisciplinary team approach. Valley nurses are trained to guide every transition from hospital to home, educate the family about patient care and support emotional needs.
“Our nurses work with facilitating the discussed plans with teams that include the medical director, social workers and chaplain to the therapists, physician and home health aides,” West said.
The Butterflies Program was conceived as a response to the needs of young oncology patients, but today it serves as pediatric palliative care for a range of medical possibilities, such as HIV, chromosomal disorders and neurological conditions. “This isn’t just hospice care as it is usually defined, caring for patients for the last six months of life,” West said. “Our name, Butterflies, was selected because it reflects a freedom from being held back during a time when it’s natural to feel confined and the metamorphosis that happens at such times of serious illness impacting not just a patient, but those all around.”
The program values the nurse’s commitment to remain with the family and patient through the entire journey. “This is coordinated care with every consideration and never fragmented,” Ranuro said. “A nurse often is the first one to ever see a patient in the home. The five nurses we have in the program also are placed with the responsibility of making the pronouncement when that time comes. We also attend the services and guide the family through needs that come with the emotions [associated with] facing bereavement.”