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Pediatric Palliative Care

WHAT YOU NEED TO KNOW:

What is pediatric palliative care?

Pediatric palliative care is specialized care for children with serious, long-term health conditions. Care can begin at any stage of illness. Palliative care helps prevent or relieve any suffering your child may have. The care also improves quality of life for your child and his or her family. A palliative care team treats the whole person, not the illness. Your child's palliative care team will work with healthcare providers as they treat the illness. Care will be specific to your child's needs and the needs of his or her family. Care can be provided in a hospital or at home. It can also be provided in a long-term care facility or outpatient clinic.

Who provides palliative care?

Your child's palliative care team may include any of the following:

  • Doctors, nurses, and dietitians
  • Physical and occupational therapists
  • Pain specialists and pharmacists
  • Chaplains, social workers, and counselors

What do I need to know about treatment and care decisions for my child?

Your child may be able to make certain decisions about treatment and care. This may depend on your child's age and condition. The palliative care team can talk with your child and any family members about treatment and care:

  • The goals for care will be defined. Treatment may include anything that might improve your child's condition or treat the illness. Rehabilitation may help your child do his or her daily activities more easily. Care may be given to help your child live as long as possible or to relieve his or her symptoms.
  • Treatment is decided based on the goals for care. Your child's team can help make a care plan to meet the goals. The care plan will include chosen treatments for your child and state how long to continue treatment. Care may change if your child's condition or goals for care change. The plan will be used where your child is currently receiving care. If your child moves to another place, the plan will move with him or her. This will help new care providers with the plan.

How will my child's symptoms be managed?

Symptoms such as pain or shortness of breath may be caused by your child's illness. Your child may have side effects from treatment, such as nausea, fatigue, or constipation. The following are ways palliative care can help prevent or treat symptoms:

  • Pain may be relieved with medicine. Other methods include massage, music, or aromatherapy. Your child's team will ask how the pain is affecting your child's quality of life. If your child is old enough, his care team may ask how bad the pain is. They may use a pain scale from 0 to 10, or have him or her choose a face on a pain scale picture. They will watch for certain signs of pain in young children.
    Pain Scale
  • Shortness of breath may be relieved with extra oxygen or breathing treatments. Your child may feel short of breath all the time, or only with activity. Treatment options depend on what is causing the shortness of breath.
  • Other symptoms can be relieved or treated to improve your child's quality of life. Examples include nausea, fatigue, and sleep problems. Your child's skin can be treated or soothed if it is irritated or he or she develops a pressure injury from lying in bed.

What support services are offered in pediatric palliative care?

  • Treatment support is given to help your child and family understand the condition and explore treatment options. The team can answer any questions your child or his or her family members have. This includes questions about your child's condition and treatment options.
  • Emotional and psychological support helps your child and those close to him or her cope with feelings about your child's condition. Patients and their families may join support groups or meet others in similar situations.
  • Practical support helps your family manage changes affecting everyday life. Services can be arranged to address education, employment, and financial concerns.
  • Spiritual and cultural support helps your child and family evaluate religious values and cultural beliefs. This may make it easier to understand and accept your child's condition.
  • Transition support can help your child, family, and friends with a change in your child's condition. Transition support can help your child readjust to daily life if his or her condition improves. The team will also continue to help if your child needs end-of-life care.

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.

© Copyright IBM Corporation 2018 Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes. All illustrations and images included in CareNotes® are the copyrighted property of A.D.A.M., Inc. or IBM Watson Health

Further information

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

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