LEADER 05205nam 2200985Ia 450 001 9910957425703321 005 20251017110155.0 010 $a9786610183708 010 $a9780309169479 010 $a030916947X 010 $a9781280183706 010 $a1280183705 010 $a9780309502153 010 $a0309502152 035 $a(CKB)111069351127542 035 $a(EBL)3375163 035 $a(SSID)ssj0000270942 035 $a(PQKBManifestationID)11206522 035 $a(PQKBTitleCode)TC0000270942 035 $a(PQKBWorkID)10280595 035 $a(PQKB)10410713 035 $a(MiAaPQ)EBC3375163 035 $a(Au-PeEL)EBL3375163 035 $a(CaPaEBR)ebr10032349 035 $a(CaONFJC)MIL18370 035 $a(OCoLC)923254372 035 $a(Perlego)4733785 035 $a(DNLM)1153998 035 $a(EXLCZ)99111069351127542 100 $a20020906d2003 uy 0 101 0 $aeng 135 $aur|n|---||||| 181 $ctxt 182 $cc 183 $acr 200 00$aWhen children die $eimproving palliative and end-of-life care for children and their families /$fCommittee on Palliative and End-of-Life Care for Children and Their Families, Board on Health Sciences Policy ; Marilyn J. Field and Richard E. Behrman, editors 205 $a1st ed. 210 $aWashington, D.C. $cNational Academy Press$dc2003 215 $a1 online resource (712 p.) 300 $aDescription based upon print version of record. 311 08$a9780309084376 311 08$aPrint version: When children die. Washington, D.C. : National Academy Press, ©2003 0309084377 (DLC) 2002014542 (OCoLC)50598446 320 $aIncludes bibliographical references and index. 327 $aIntroduction -- Patterns of childhood death in America -- Pathways to a child's death -- Communication, goal setting, and care planning -- Care and caring from diagnosis through death and bereavement -- Providing, organizing, and improving care -- Financing of palliative and end-of-life care for children and their families -- Ethical and legal issues -- Educating health care professionals -- Directions for rese 330 8 $aThe death of a child is a special sorrow. No matter the circumstances, a child's death is a life-altering experience. Except for the child who dies suddenly and without forewarning, physicians, nurses, and other medical personnel usually play a central role in the lives of children who die and their families. At best, these professionals exemplify "medicine with a heart." At worst, families' encounters with the health care system leave them with enduring painful memories, anger, and regrets. When Children Die examines what we know about the needs of these children and their families, the extent to which such needs are -- and are not -- being met, and what can be done to provide more competent, compassionate, and consistent care. The book offers recommendations for involving child patients in treatment decisions, communicating with parents, strengthening the organization and delivery of services, developing support programs for bereaved families, improving public and private insurance, training health professionals, and more. It argues that taking these steps will improve the care of children who survive as well as those who do not -- and will likewise help all families who suffer with their seriously ill or injured child. Featuring illustrative case histories, the book discusses patterns of childhood death and explores the basic elements of physical, emotional, spiritual, and practical care for children and families experiencing a child's life-threatening illness or injury 606 $aTerminally ill children$xCare 606 $aTerminally ill children$xFamily relationships 606 $aPalliative treatment 606 $aChildren 606 $aMedical policy 606 $aPatient participation 606 $aTerminal Care 606 $aChild 606 $aPalliative Care 606 $aHealth Policy 606 $aPatient Participation 606 $aProfessional-Family Relations 606 $aTerminal Care$xeconomics 606 $aTerminal Care$xlegislation & jurisprudence 607 $aUnited States 615 0$aTerminally ill children$xCare. 615 0$aTerminally ill children$xFamily relationships. 615 0$aPalliative treatment. 615 0$aChildren. 615 0$aMedical policy. 615 0$aPatient participation. 615 12$aTerminal Care. 615 2$aChild. 615 2$aPalliative Care. 615 22$aHealth Policy. 615 22$aPatient Participation. 615 22$aProfessional-Family Relations. 615 22$aTerminal Care$xeconomics. 615 22$aTerminal Care$xlegislation & jurisprudence. 676 $a362.1/75/083 701 $aField$b Marilyn J$g(Marilyn Jane)$01804195 701 $aBehrman$b Richard E.$f1931-$0630342 712 02$aInstitute of Medicine (U.S.).$bCommittee on Palliative and End-of-Life Care for Children and Their Families. 801 0$bMiAaPQ 801 1$bMiAaPQ 801 2$bMiAaPQ 906 $aBOOK 912 $a9910957425703321 996 $aWhen children die$94364943 997 $aUNINA