Pediatric Palliative Care Programs Growing to Support Seriously Ill
By Jennifer Larson, contributor
Does your current facility offer palliative care to children and teens, and not just for those at the end of life?
According to a November 2013 analysis in the journal Pediatrics, pediatric palliative care is “a rapidly growing medical subspecialty designed to meet the needs of seriously ill children and their families.” These pediatric patients may be living with cancer, muscular dystrophy, cystic fibrosis, severe brain problems, complications from prematurity and birth defects and rare disorders, among other conditions.
The study noted that a growing number of children’s hospitals have established palliative care programs over the past decade or so. Of the 162 children’s hospitals that responded to a survey by the Center to Advance Palliative Care’s Pediatric Advisory Board in 2012, 69 percent reported having a pediatric palliative care program.
There is both a greater awareness of pediatric palliative care and a growing openness to find ways to incorporate it into the management of children with life-threatening or life-limiting illnesses, said neonatologist Brian Carter, MD, chairperson of the American Academy of Pediatrics’ section on hospice and palliative medicine.
“It’s made phenomenal progress, if you will, over the past 10 to 15 years,” he said.
The Patient Protection and Affordable Care Act has helped by removing barriers to providing concurrent care to children enrolled in Medicaid or the Children’s Health Insurance Program (CHIP). In the past, due to reimbursement restrictions, there were some situations when a family had to decide between a curative treatment and a treatment designed just to help the patient feel better; it was one or the other, but not both.
“Now families don’t have to choose,” said Gwynn Sullivan, MSN, RN, the pediatric liaison for the National Hospice and Palliative Care Organization.
However, the Pediatrics article researchers cautioned, there is a great deal of variation among the existing pediatric palliative care programs. Some hospitals are able to devote more staff and resources to their programs than others.
And, as Carter noted, there is still a need in many communities for pediatric palliative care programs--and a need for greater awareness of the benefits to this type of care, which is often referred to as an extra layer of supportive care.
“The public is learning more, and families are learning more, but is it on the forefront of everybody’s radar?” asked Kathie Kobler, MS, APN, PCNS-BC, president of the Hospice and Palliative Nurses Association’s National Board for Certification of Hospice and Palliative Nurses (NBCHPN). “Probably not.”
With that need in mind, the National Institute of Nursing Research (NINR) launched an initiative in January to heighten awareness of the benefits of pediatric palliative care. One key aspect of the “Palliative Care: Conversations Matter” campaign is to explain how palliative care can provide much-needed support to both children and their families.
The difference between palliative care and hospice care
Palliative care is designed to improve a patient’s quality of life, by relieving pain and other symptoms, during a serious or life-threatening illness, according to the National Institute of Nursing Research. Patients receive palliative care along with their treatment, not instead of treatment.
Hospice care is a particular type of palliative care that is provided at the end of a person’s life (usually within the last six months).
“The campaign strives to break the common association between palliative care and hospice care, stressing that palliative care is appropriate throughout illness--not only at the end of life,” noted Patricia Grady, PhD, RN, NINR director.
Because of the common misconception that palliative care is the same thing as hospice care, as well as other barriers, “providers can be hesitant to talk about palliative care with patients and their families early in treatment,” said Grady.
Many experts also hope that greater awareness will lead to more children being offered palliative care at an earlier point. Like many of her fellow palliative care nurses, Kobler would like to see palliative care teams involved from the moment of diagnosis. They can work together with the patient’s primary care team to co-create approaches to best serve that child’s needs.
“We’re not taking over,” said Kobler. “We’re collaborating.”
It’s also useful to have palliative care teams involved at the outset because those relationships will already be in place, which may make it easier to move toward hospice care if it is needed, said Sullivan.
The NINR campaign includes a number of tools to help providers learn more about palliative care and also begin having conversations with their patients and families about this approach. Nurses may also want to turn to organizations like the National Hospice and Palliative Care Organization for educational information, as well as the American Association of Colleges of Nursing’s End-of-Life Nursing Education Consortium (ELNEC), which has trained nearly 18,000 nurses and other health care professionals to educate their colleagues on how to provide quality palliative care.
It may also be useful to consult a hospital with a very well established interdisciplinary pediatric palliative care team, like Boston Children’s Hospital.
Sullivan hopes to see access to these programs continue to expand.
“The numbers are small, but the need is great,” she said. “For the children that are facing these issues and the families that are facing these issues, it is so important.”
Resources for professionals:
NINR’s Conservations Matter Campaign
The National Hospice and Palliative Care Organization’s pediatrics resources
End-of-Life Nursing Education Consortium
American Academy of Pediatrics’ Section on Hospice and Palliative Medicine
The Center to Advance Palliative Care
Hospice and Palliative Nurses Association
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