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Pediatric Palliative Care

AMBULATORY 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 family. Hospice care is a type of palliative care during the last 6 months of life. 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 your family. Care is provided in a place chosen by you and your child. That place can be at home or in a facility.

Who provides palliative care:

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

  • Doctors, nurses, and dietitians
  • Physical, respiratory, speech, and occupational therapists
  • Music, art, and massage therapists
  • Pain specialists and pharmacists
  • Chaplains, social workers, counselors, and volunteers

What you need to know about treatment and care decisions for your 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 of care. 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.

Support services offered in pediatric palliative care:

Your child's team is available 24 hours a day, 7 days a week for support. You may be able to speak to them by phone, in person, or through a patient portal application (app).

  • 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.

For support and 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

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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.

Learn more about Pediatric Palliative Care (Ambulatory Care)

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