Date of this Version

11-2012

Document Type

Article

Abstract

More than 25,000 infants and children die in US hospitals annually; 86% occur in the NICU or PICU. Parents see the child’s pain and suffering and, near the point of death, must decide whether to resuscitate, limit medical treatment and/or withdraw life support. Immediately after the death parents must decide whether to see and/or hold the infant/child, donate organs, agree to an autopsy, make funeral arrangements, and somehow maintain functioning. Few children and their families receive pediatric palliative care services, especially those from minority groups. Barriers to these programs include lack of services, difficulty identifying the dying point, discomfort in withholding or withdrawing treatments, communication problems, conflicts in care among providers and between parents and providers, and differences in cultural beliefs about end-of-life care. The 2011 NIH Summit on the Science of Compassion provided recommendations in family involvement, end-of-life care, communication, health care delivery, and transdisciplinary participation.

Comments

Author's Accepted Manuscript.

The publisher's final edited version of this article is available at Nurs Outlook

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