The study also noted that while the typical adult receives palliative care for between one to three months, two-thirds of the children survived past 12 months. "The average span of these patients was longer than many would have expected, and the study results help emphasize that children receiving palliative care services are living and that palliative care is principally about how to best live with grave life-threatening conditions," the report concludes.
After 56 consults the first year, the Iowa palliative care program has been constantly growing, from babies through children reaching adulthood. "We are providing comprehensive management of the physical, spiritual, and social being for children," Petitgout adds. The program has been directed to patients with myriad diseases such as cancer, cardiac problems, genetic disorders, and muscular dystrophy.
The palliative care team includes nurse practitioners, outpatient nurses, a child life therapist, social workers, a grief service coordinator, a psychologist, pharmacist, and medical director.
"It's about wellness for these children, but also the entire family," she says.
Palliative care programs for children have shown increased family satisfaction. In a 2009 report to the Agency for Healthcare Research and Quality that focused on a pediatric advanced care team at Dana-Farber Cancer Center and Children's Hospital in Boston, researchers found that palliative care and hospice care helped "ease patient suffering" and helped "parents feel more prepared." At least 92% expressed patient satisfaction in pain management, and 96% in patient support.
Petitgout says that palliative care support was illustrated in the case of a 12-year-old girl stricken with a rare and fatal blood disorder. The girl had surprised Iowa University Health System officials—as well as her parents—with talk about wanting to "write a will," recalls Petitgout.
The hospital's palliative care nurse worked with the child, for "hours and hours," helping her craft the words she wanted to say, Petitgout says. The writings became more than a will—they became a testament about the young girl's life. "That book was a connection for the mom to her [daughter], and has given [the mother] comfort," Petitgout says. The girl has since died.
Success key No. 4: What's in a name?
Palliative care experts describe what they term a "branding problem" in which patients, and even hospital officials, confuse palliative care with hospice programs that assist patients in their final stages of life. The confusion between palliative care and hospice care makes some people hesitant to choose palliative care, because they are not at the end of their lives, says Quill.
"What the heck is palliative care? Right away, palliative care has a name recognition issue," Quill says. "Its name recognition is relatively low at 20%. When people learn about it, they ask, 'Why didn't I get that earlier, why isn't that the care for all seriously ill people?' Hospice has a higher name recognition, but it's for people at the end of life," Quill adds.
The Rochester Medical Center has initiated educational programs to improve the awareness of palliative care, according to Quill. At Saint Agnes Medical Center, Nisco says the palliative care team at his hospital has had "clarifying discussions" about the nature of palliative programs with patients and other physicians.
Nisco concedes that when he initially meets patients and their families to discuss his program, he tries to avoid the word "palliative" because of so much misunderstanding. People immediately associate palliative care with hospice. Some hospitals have coined the term "supportive care" to describe their programs, Nisco says.
"There's this assumption that it is just for dying people," Nisco explains. "Despite the success at our hospital, you'll find similar themes. A provider may say from time to time, 'Why do we need that?' At institutions large and small, there's this blind spot. Part of the branding problem is that people think about death and dying. On the contrary, we are promoting life and quality of life."
Such barriers must be overcome, Nisco says, because it stifles the possibilities of palliative care. "People would misunderstand and think the treatment is not working and it means that they are going to die," he says. While some patients who receive palliative care have terminal illnesses, others have serious illnesses, but still can be cured and have longer lives and may benefit by using Saint Agnes' program for pain management and supportive care during all phases of treatment.
Too often, physicians believe that when palliative care is involved, that suggests treatment has been a failure. "In that way, it makes it difficult to promote the program," Nisco says. Palliative care is an integral part of the evolving standard to provide the best possible care to patients."
This article appears in the July 2012 issue of HealthLeaders magazine.