How Do You Start the Palliative Care Conversation in the Pediatric Setting?

Dealing with a serious illness in someone of any age is difficult, but especially when the patient is a child. However, palliative care can provide symptom management and emotional support for pediatric patients and their families, and research has shown that it may also increase overall satisfaction with care. 

Yet many healthcare providers hesitate to recommend palliative care for their youngest patients, and parents and caregivers are often unaware of its benefits. Oncology nurses are uniquely positioned to discuss palliative care options with pediatric patients and their families, providing education and ensuring clear communication between providers and families.

“Initiating palliative care conversations is often hard for both providers and families, especially in the pediatric setting,” said National Institute of Nursing Research (NINR) Director Dr. Patricia A. Grady. “While it may not be an easy conversation, recommending palliative care to patients and families early can improve patient outcomes.”

NINR developed and tested materials for its Palliative Care: Conversations Matter campaign, which helps health care providers and patients understand the importance of palliative care in the pediatric setting. Included are the following recommendations to guide healthcare providers in having palliative care conversations.

1. Start the discussion by providing background on palliative care. Patients and their families are often unfamiliar with the term and what services are included.
2. Explain which palliative care services are available in your care setting. 
3. Provide information about additional palliative care services in your community. This might include home-based care teams, tertiary care facilities, community health centers, or a local social worker or faith leader experienced in palliative care. 
4. Provide information about the different members of a palliative care team. Include the names and contact information of the recommended team (e.g., social worker, chaplain, dietitian, home health aide).
5. Convey to patients and their families that this is the first of many conversations. Schedule a date and recurring time frame for when the patient’s care will be discussed.

NINR’s Palliative Care: Conversations Matter campaign also offers videos and a tear-off pad of customizable patient education sheets designed to guide discussions with patients and their families. The pad also provides tips for healthcare providers and answers to common questions about palliative care. For more information and to download materials, visit NINR's website. 

Tags: 

National Institute for Nursing Research

palliative care

pediatrics

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