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When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families--Summary (2003)
Board on Health Sciences Policy (HSP)
Institute of Medicine (IOM)

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. "Summary." When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families--Summary. Washington, DC: The National Academies Press, 2003.

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When Children Die: Improving Palliative and End-of-Life Care For Children and Their Families

What is palliative care?

Michael’s doctor worked the entire way knowing that if Michael didn’t make it, we were still going to have to get through it. So she treated us, as well as treated Michael.

Rose Conlon, parent

Palliative care supports and comforts children with life-threatening illnesses or injuries. Its purpose is to:

  • Prevent or relieve pain and other physical distress.

  • Offer children and families – especially parents, brothers, sisters, and grandparents – the emotional and spiritual support they need.

  • Help children and families live as normal a life as they can.

  • Help families make decisions.

  • Give them timely and truthful information.

  • Respect families’ choices, values, and cultural traditions.

Palliative care works with – not instead of – other treatments. It can start as soon as the family knows the child is ill. Palliative care does not mean “giving up.” Good palliative care can help all seriously ill or injured children, not only those who are dying.

End-of-life care and hospice care focus on taking care of children as they near death. They can help each family:

  • Ease their child’s pain and other symptoms.

  • Keep their child calm and comfortable.

  • Make decisions about the use of life-support.

  • Talk about last wishes.

  • Grieve the death of the child.

When children need palliative care.

Children and families need palliative care beginning when they learn of the serious medical condition. They need it all through treatment and at the end of life. The care that children need will change as their condition changes. And at each stage of life – infant, child, and teen – children’s needs will differ.

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