Conversations Matter: Let's Talk about Palliative Care

National Institute of Nursing Research Unveils Campaign to Help Pediatric Patients

PR Newswire

BETHESDA, Md., May 30, 2014 /PRNewswire/ -- When three-year-old Rachel was diagnosed with cancer, it was one of the worst days of her mother's life. Tests, medications, surgery—young Rachel's life turned upside down. She fought taking medicine and the frequent finger pricks. Rachel did not like to see the nurses and doctors come into the room because she was afraid of what was coming next.

Then her health care provider recommended palliative care.

"Palliative care made a huge difference in Rachel's life," her mother said. "You had your oncology doctors, your palliative care doctors, your nurses, you had social workers involved. You had alternative therapy doctors that became very involved. And the best part about it was that I became part of the team. I was listened to. My daughter became part of the team. They talked to her, they listened to her, [and] they helped her along through her treatments."

Palliative care can reduce a child's pain, help manage other distressing symptoms, and provide important emotional support to the child and family throughout the course of an illness. Research has shown that pediatric palliative care services may also increase overall satisfaction with care for patients and their families. Yet, many health care providers hesitate to recommend palliative care for their youngest patients, and parents and caregivers are often unaware of its benefits.

To encourage early and ongoing conversations between families and health care providers about pediatric palliative care, the National Institute of Nursing Research (NINR) developed the "Palliative Care: Conversations Matter™" campaign (www.ninr.nih.gov/conversationsmatter).

"Initiating palliative care conversations is often hard for both providers and families, especially in the pediatric setting," said Dr. Patricia A. Grady, Director of NINR, which supports research that aims to improve palliative care for those with serious illness, including children. "While it may not be an easy conversation, recommending palliative care to patients and families early can improve patient outcomes, such as comfort and quality of life."

The campaign emphasizes that palliative care works along with other treatments to enhance quality of life for children of any age living with a broad range of serious illnesses. It 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.

Campaign resources include materials and a website (www.ninr.nih.gov/conversationsmatter) with information for health care providers, families and caregivers. The materials consist of a series of video vignettes and a customizable tear-off pad (available in English and Spanish) which includes tips for health care providers, answers to common questions about palliative care, and customizable patient education sheets designed to guide the provider's discussion with the patient and his/her parent or caregiver. One of the videos features the experience of Rachel's family with palliative care. The other vignettes introduce palliative care and explain why it is important—especially for pediatric patients. They address common misconceptions about palliative care and include tips for starting and managing palliative care conversations. The materials are free and can be downloaded from the website or requested by e-mailing info@ninr.nih.gov.

"For a pediatric patient, palliative care can enhance the child's quality of life and provide an added layer of support for the entire family," said Dr. Grady. "We hope this campaign and its resources will help ensure that palliative care is considered for every child and family navigating a serious illness."

If you think palliative care could help your child, your family or you, ask for it now. Tell your child's health care provider that you would like to add palliative care to your child's treatment plan and if palliative care services are available, ask your provider for a referral.

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