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Pediatric Hospice Care

WHAT YOU NEED TO KNOW:

What is pediatric hospice care?

Pediatric hospice care focuses on making your child comfortable during the last months of life. Care will be specific to your child's needs and the needs of those close to him or her. Care can be provided at home or in a hospital. It can also be provided in a hospice or long-term care facility.

Who provides hospice care?

Hospice care is provided by a team trained in support and education related to death and dying. The team includes doctors, nurses, and social workers. It may also include home health aides, clergy, therapists, and trained volunteers. The hospice doctor and your child's healthcare providers will work together to manage your child's care. They will also work to understand and respect the wishes of your child and family. A team member will be available any time day or night to answer questions, help, or just to listen.

What do hospice care services include?

  • Treatment management helps ease your child's symptoms, such as pain. Pain may be relieved with medicine or with other methods, such as massage, music, or aromatherapy. Equipment, a bed, or other medical supplies may be provided to help care for your child.
  • Emotional and psychological care is provided to help your child and those close to him or her. Team members will meet with your child and family regularly about his or her condition. Your child and those close to him or her may also join support groups or meet others receiving hospice care.
  • Respite care gives your family or child's regular care providers short-term rest. During this time, your child will be cared for in a hospice facility, hospital, or other care facility.
  • Practical support assists with concerns such as legal issues and funeral arrangements. Your social worker can help you find services that fit your child's needs and your family's needs.
  • Spiritual and cultural support helps your child and your family evaluate religious values and cultural beliefs. This may make it easier to understand and accept your child's condition.
  • Loss support is provided for about 1 year. The hospice care team will help your child's family through the process of grieving. Your child's loved ones will receive visits and phone calls, and may be referred to support groups.

Where can I find more information?

  • National Hospice & Palliative Care Organization (NHPCO)
    1731 King Street, Suite 100
    Alexandria , VA 22314
    Phone: 1- 800 - 658-8898
    Web Address: https://www.nhpco.org/
  • Children's Project on Palliative/Hospice Services (ChiPPS)
    National Hospice and Palliative Care Organization
    1731 King Street, Suite 100
    Alexandria , VA 22314
    Phone: 1- 800 - 658-8898
    Web Address: https://www.nhpco.org/pediatric

Care Agreement

You have the right to help plan your child's care. Learn about your child's health condition and how it may be treated. Discuss treatment options with your child's healthcare providers to decide what care you want for your child. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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Further information

Always consult your healthcare provider to ensure the information displayed on this page applies to your personal circumstances.