For children with terminal illnesses, sometimes small details in how they’re cared for can make a huge difference. In a new EDC video created to improve the care of seriously ill children, a young boy describes his frustration when he can’t get a nurse to move an IV stand that prevents him from holding his mother’s hand. “Why wouldn’t the nurse listen to me?” he wonders. In another video in the series, a grandmother and guardian of a child who has died from cancer gives succinct advice to health care providers dealing with families of dying kids: “Listen. Just listen…. ”
The video series is part of an extensive curriculum being developed by the Initiative for Pediatric Palliative Care (IPPC), based at EDC, to help improve the way health care professionals care for seriously ill children and their families. “What you hear in each of these videotapes is families giving feedback to healthcare providers. They need more connection with them. They need people to care, to show their humanness,” says EDC’s Dave Browning, Senior Research Associate who has overseen the production of several of the videos.
IPPC, a project of EDC’s Center for Applied Ethics and Professional Practice (CAEPP), is a collaboration of EDC with several partnering health organizations and eight children’s hospitals. The goal of the initiative is to enhance the capacity of children’s hospitals to provide family-centered care in these most difficult circumstances. Family-centered health care for children includes, but is not limited to, involving families in decision-making to the extent that they are comfortable; involving the children in developmentally appropriate ways; reducing pain and distressful symptoms; and providing emotional support.
Although there has been a strong national movement to improve palliative care among adult patients, very little has been done in the United States to address issues specific to the care of seriously ill children. “I’ve been working on adult issues around death and dying since 1987,” says EDC Vice President Mildred Z. Solomon, Director of CAEPP and Principal Investigator of IPPC. “In the beginning, there was tremendous controversy. People didn’t want to talk about death and dying of adults, and certainly not children. But as our work with adults matured, there was a gradual shift.” In fact, Solomon said, the shift is now so pronounced that the Institute of Medicine recently issued a report calling for systematic improvement in palliative care for children. IPPC’s new curriculum is poised to become a key contributor to this effort.
The IPPC curriculum is organized around six modules, each including videos featuring interviews with patients and families discussing their experiences. “We needed to have families say directly what some of the problems were, rather than our saying it one step removed,” explained Browning. “In the videos, the families really talk directly to healthcare professionals about the importance of relationships. They say very clearly what they need from professionals.” As one father in the video puts it, “Nobody every turned to us and just said, ‘Boy, this really sucks.’”
According to Solomon, the challenges healthcare professionals and hospitals face are great when caring for children suffering from life-threatening diseases. “Healthcare providers suffer terribly themselves from caring for these children,” she explains. “And, of course, parents are going through the worst experience of their lives. We hope to create a culture in the hospitals where there is permission to recognize and to express the reality the families and caregivers are confronting.”
The first two modules of the curriculum that have just been released are Engaging with Children and Families, and Relieving Pain and Other Symptoms. The entire curriculum will be pilot-tested in IPPC’s eight partnering hospitals. After incorporating feedback from these test sites, IPPC plans to disseminate the curriculum nationwide with the help of its partner, the National Association of Children’s Hospitals and Related Institutions. Within the next year, IPPC will release and pilot the remaining modules including: Sharing Decision Making; Improving Communications and Strengthening Relationships; Responding to Suffering and Bereavement; and Establishing Continuity of Care.
“As much as bringing content about palliative care to these hospitals,” says Browning, “we’re looking towards changing attitudes and behaviors towards these children and families.”
Originally published on December 1, 2002