The trusted source for
healthcare information and
Standards for pediatric patients offer support for community hospice
Guidance designed to increase access to care
With 53,000 children dying each year and another 400,000 children living with chronic, life-threatening conditions, the need for hospice and palliative care for pediatric patients continues to grow. Although only 10-20% of dying children receive hospice services, a pediatric services study conducted by the National Hospice and Palliative Care Organization (NHPCO) in 2007 shows that most hospices provide some pediatric care even though a minority has a pediatric care program in place.1
The American Academy of Pediatrics recently awarded an Affirmation of Value to the NHPCO Standards of Practice for Pediatric Palliative Care and Hospice that were developed by the NHPCO's Children's Project for Palliative/Hospice Services (ChiPPS).
"Pediatric palliative care and hospice is a new and growing field that needs standards to bring everyone up to date on new advances," says Sarah Friebert, MD, director of the Haslinger Family Pediatric Palliative Care Division at Akron Children's Hospital in Akron, OH, and consulting medical director to NHPCO. The standards were developed by members of a workgroup of the Children's Project on Palliative/Hospice Services (ChiPPS), an official advisory committee to NHPCO, Friebert says. "We solicited input from ChiPPS membership as well as people in the field," she explains. "We wanted to make sure the standards are flexible enough to adapt to hospices in different settings."
The care of children is different from palliative and hospice care for adults, says Mary Kay Tyler, CNP, MSN, director of pediatrics and clinical support teams at the Hospice of the Western Reserve in Cleveland, OH. "Most hospices don't realize how many additional resources are needed to care for children and their families," Tyler says. "Hospice staff and volunteers have to be well-versed in communicating with a wide range of ages." For example, the staff is providing care not only for a 6-year-old cancer patient, but the staff is also interacting with parents, grandparents, and siblings that might be 3 years old and 10 years old, she points out. Knowing how to communicate with the adults as well as siblings, friends, or classmates at different developmental levels is important, Tyler adds.
"A hospice also needs to know how to work with the patient's school," she says. "We usually educate school counselors so they can provide support to the patient's classmates as well as the child if he or she goes to school while receiving palliative care." Although the hospice counseling staff is available to the students, it is important to provide education to the school's counselors because they are most familiar with the students and they are at the school every day, she adds.
In addition to being able to provide additional social support needs that adults do not require, a hospice caring for a pediatric patient will have to address different clinical needs, says Friebert. "The most significant difference is the longer episode of care for a pediatric palliative care patient," she says. "With adults, we don't usually get involved until much later in their care, but with children, we are often brought in for consultation at diagnosis or soon after," Friebert explains.
The pediatric standards are based upon the NHPCO's 10 core standards for adults, says Susan Huff, RN, MSN, director of Pediatrics at Home from Johns Hopkins Home Care Group in Baltimore, MD. "We reviewed these carefully, then revised them to address pediatric-specific issues," Huff says. The standards not only identify best practices for pediatric care, but also provide options for hospices that see different numbers of patients each year, she says.
Hospices that serve a large pediatric population will have child life specialists and pediatricians on staff to provide the specialized care a pediatric patient needs, but a lot of care is provided by hospices that see a few patients a year, Huff says. "These standards should provide support for those programs that care for few children," she says. "We recognize that a program that sees four children a year will not be able to employ a child life specialist, but we offer suggestions on how to collaborate within the community to find the expertise you need."
Although the standards call for a pediatric medical advice to be available 24 hours a day, the hospice doesn't have to employee a pediatrician or family practitioner, says Huff. "Contract with a community physician who has knowledge of pediatric palliative care and the ability to work on a consultative basis," she says. If there are no community physicians with the necessary expertise, a long-distance partnership with a children's hospital's palliative care program is a possibility, she says.
The pediatric standards do serve as a benchmark for hospices to use as they evaluate the pediatric services they provide, says Friebert. "However, we don't want to discourage hospices from providing pediatric services," she says. "These standards actually provide support and guidance to show hospices how they can meet a high standard of care using resources available to them."
The standards are designed to offer options so that hospice managers can relate them to each individual setting, says Friebert. "They are not meant to scare hospices away from serving pediatric patients, but are designed to make it easier for hospices to provide high quality care," she explains.
Huff says, "We developed these standards to show how to collaborate with others to provide hospice and palliative care that children need. None of us should work in a vacuum. Collaboration is the best way to grow a pediatric hospice program that provides quality care for more children."
1. Friebert S and Huff S. NHPCO's Pediatric Standards: A key step in advancing care for America's children. NHPCO Newsline. February 2009.