Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Selected references by contributors to this issue:

Anand KJS, McGrath PJ, Finley GA, Schechter NL, Levetown M. Pain in infancy and childhood. Annales Nestle. 1999;57(1):1-37.

Goldman A. (ed.) Care of the Dying Child. 2^nd Edition. London: Oxford University Press, 1998.

Goldman A. ABC of palliative care. Special problems of children. British Medical Journal. 1998;316:49-52.

Goldman A. Palliative care for children. Palliative Medicine. 1995;9(3):179-180.

Goldman A, Christie D. Children with cancer talk about their own death with their families. Pediatric Hematology and Oncology. 1993;10(3):223-231.

Hunt A, Joel S, Dick G, Goldman A. Population pharmacokinetics of oral morphine and its glucuronides in children receiving morphine as immediate-release liquid or sustained-release tablets for cancer pain. Journal of Pediatrics. 1999;135(1):47-55.

Levetown M. Ethical aspects of pediatric palliative care. Journal of Palliative Care. 1996;12(3):35-39.

Levetown M. Different - and needing to be more available. Hospice. 1995:15,16,36.

Levetown M, Pollack MM, Cuerdon TT, Ruttimann UE, Glover JJ. Limitations and withdrawals of medicine in pediatric critical care. Journal of the American Medical Association. 1994;272:1271-1275.

Liben S, Goldman A. Home care for children with life-threatening illness. Journal of Palliative Care. 1998;14(3):33-38.

Rushton CH. Bridging the Tensions Between Care and Cure, Chapter 10 in Pediatric Ethics - From Principles to Practice. Cassidy RC, Fleischmann AR (eds.). The Netherlands: Harwood Academic Publishers, 1996.

Rushton CH, Lynch ME. Dealing with advance directives for critically ill adolescents. Critical Care Nurse. 1992;12(5):31-7.

Rushton CH, Glover JJ. Involving parents in decisions to forego life-sustaining treatment for critically ill infants and children. AACN Clinical Issues in Critical Care Nursing. 1990;1(1):206-14

A Guide to the Development of Children’s Palliative Care Services. Report of joint working party of ACT (Association for Children with Life-threatening or Terminal Conditions and their Families) and RCPCH (Royal College of Paediatrics and Child Health). January 1997. Available from ACT, Orchard House, Orchard Lane, Bristol BS1 5DT. Tel/Fax: 01179.9304707. (From the US, try 011-44-179-930-4707.)

Armstrong-Dailey A, Zarbock Goltzer S. (eds.) Hospice Care for Children. New York, NY: Oxford University Press, 1993.

Ashby MA, et.al. An enquiry into death and dying at the Adelaide Children’s Hospital: A useful model? The Medical Journal of Australia. 1991;154:165-170.

Black D. Coping with loss: The dying child. British Medical Journal. 1998;316:1376-1378.

Bluebond-Langner M. In the Shadow of Illness : Parents and Siblings of the Chronically Ill Child. Princeton, NJ: Princeton University Press, 2000.

Bluebond-Langner M. The Private Worlds of Dying Children. Princeton, NJ: Princeton University Press, 1978.

Bouffet E, Zucchinelli V, Costanzo P, Blanchard P. Schooling as part of palliative care in paediatric oncology. Palliative Medicine. 1997:133-139.

Cancer Pain Relief and Palliative Care in Children. Geneva, Switzerland: World Health Organization, 1998. Abstract may be found at http://who-pcc.iarc.fr/Publications/Publications.html

Cassel CK, Foley KM. Principles for Care of Patients at the End of Life: An Emerging Consensus Among the Specialties of Medicine. New York, NY: Millbank Memorial Fund, 1999.

Cassidy RC. A Time to Die: Ethical, Legal and Professional Grounds for Judgement, in Pediatric Ethics - From Priciples to Practice, RC Cassidy, AR Fleischman, (eds.). The Netherlands: Harwood Academic Publishers, 1996, 15-35.

Cassidy RC, Fleischman AR. (eds.) Pediatric Ethics - From Principles to Practice. The Netherlands: Harwood Academic Publishers, 1996.

Children’s Cancer Pain Can Be Relieved: A Guide for Parents and Families. Wisconsin Cancer Pain Initiative, 1989.

Children’s Hospice International. 1998 Survey: Hospice care for children: Executive summary report. Alexandria, VA: Children’s Hospice International, 1998.

Dangel T. Paediatric palliative care - a personal perspective (ethics). European Journal of Palliative Care. 1998; 5(3):86-91.

Dokken DL, Sydnor-Greenberg N. Helping families mobilize their personal resources. Pediatric Nursing. 1998;24(1):66-69.

Doyle D, Hanks GWC, MacDonald N. (eds.) Oxford Textbook of Palliative Medicine, 2^nd Edition. Oxford: Oxford University Press, 1998, 1013-1120.

Dunlop RJ, Hockley JM. (eds.) Hospital-based Palliative Care Teams: The Hospital-Hospice Interface. End-of-Life Care for Children and Their Families: Ethical Dimensions. Glaxco Wellcome, Inc. 1997.

Faulkner KW. Pediatric hospice reference library. American Journal of Hospice and Palliative Care. 1997;14(5):228-30.

Finley GA, McGrath PJ. (Eds.) Chronic and Recurrent Pain in Children and Adolescents. Progress in Pain Research and Management, Vol. 13. Seattle: IASP Press, 1999.

Finley GA, McGrath PJ (eds.). Measurement of Pain in Infants and Children. Progress in Pain Research and Management, Vol. 10. Seattle: IASP Press, 1998.

Finley GA. Paediatric pain: A year in review. Current Opinion in Anaesthesiology. 1998;11:295-299.

Fleischman AR. Commentary: Ethical issues in pediatric pain management and terminal sedation. Journal of Pain and Symptom Management. 1998;15:260.

Frager G. Palliative care and terminal care of children. Child and Adolescent Psychiatric Clinics of North America. 1997;6:889-909.

Haberle H, et.al. Family-oriented management of children and adolescents with cancer. [article in German] Praxis Der Kinderpsychologie Und Kinderpsychiatrie. 1997;46(6):405-419.

Homer CJ, Marino B, Cleary PD, Alpert HR, Smith B, Crowley Ganser CM, Brustowicz RM, Goldmann DA. Quality of care at a children’s hospital: The parent's perspective. Archives of Pediatric Adolescent Medicine. 1999;153(11):1123-1129.

Hospice. Special pediatrics issue. 1998;9(1).

Hostler SL (ed.). Family-Centered Care: An Approach to Implementation. Charlottesville, VA: The University of Virginia, Children’s Medical Center, Kluge Children’s Rehabilitation Center, 1994.

Huddleston D, Alexander R. Communicating in end-of-life care. Caring. 1999;18(2):16-8, 20

Johnson BH, Jeppson ES, Redburn L. Caring for Children and Families: Guidelines for Hospitals. Bethesda, MD: Association for the Care of Children's Health, 1992.

Journal of Palliative Care. Special thematic issue: When children have to die: Pediatric palliative care. 1996;12(3).

Kenny NP, Frager G. Refractory symptoms and terminal sedation of children: Ethical issues and practical management. Journal of Palliative Care. 1996;12(3):40-45.

Lantos JD, Berger AC, Zucker AR. Do not resuscitate orders in a children’s hospital. Critical Care Medicine. 1993;21(1):52-55.

Levy M, et.al. Home-based palliative care for children - Part 1: The institution of a program. Journal of Palliative Care. 1990;6(1):11-15.

Lynn J, Harrold J, The Center to Improve Care for the Dying. The dying of children. Chapter 14 in Handbook for Mortals: Guidance for People Facing Serious Illness. New York, NY: Oxford University Press, 1999, 161-170.

Martinson I. An international perspective on palliative care for children. Journal of Palliative Care. 1996;12(3):13-15.

Martinson IM. Pediatric hospice nursing. Annual Review of Nursing Research. 1995;13:195-214.

Masera G, Spinetta JJ, Jankovic M, Ablin AP, D’Angio GJ, Van Dongen-Melman J, Eden T, Martins AG, Mulhern RK, Oppenheim D, Topf R, Chesler MA. Guidelines for assistance to terminally ill children with cancer: A report of the SIOP Working Committee on psychosocial issues in pediatric oncology. Medical Pediatric Oncology. 1999;32(1):44-48.

Masera G, et.al. Guidelines for a therapeutic alliance between families and staff: A report of the SIOP working committee on psychosocial issues in pediatric oncology. Medical Pediatric Oncology. 1998;30(3):183-186.

McGrath PJ, Finley GA, Ritchie J. Pain, Pain, Go Away: Helping Children With Pain. Bethesda, MD: Association for the Care of Children’s Health, 1994.

McGrath PJ, Finley GA, Turner CJ. Making Cancer Less Painful: A Handbook for Parents. Halifax: IWK Hospital for Children, 1992.

Meyers HI. Spiritual care in pediatric hospice. American Journal of Hospice Care. 1989;6(3):12.

Papadatou D. Training health professionals in caring for dying children and grieving families. Death Studies. 1997;21(6):575-600.

Pfund R. Children's palliative care services: Implications for everyone's practice. Paediatric Nursing. 1998;10(4):12-5.

Schecter N, Berde C, Yaster M. (eds.) Pain in Infants, Children and Adolescents. Philadelphia: Williams and Wilkins, 1993.

Schecter NL, Altman A, Weisman S. (eds.) Report of the consensus conference on the management of pain in childhood cancer. Pediatrics. 1990;86(5):813-834, [Supplement].

Sourkes BM. Armfuls of Time: The Psychological Experience of the Child with a Life-Threatening Illness. Pittsburgh: University of Pittsburgh Press, 1995.

Spinetta JJ, Jankovic M, Eden T, Green D, Martins AG, Wandzura C, Wilbur J, Masera G. Guidelines for assistance to siblings of children with cancer: Report of the SIOP Working Committee on psychosocial issues in pediatric oncology. Medical Pediatric Oncology. 1999;33(4):395-398.

Sumner L, Hurlurla J. Pediatric hospice nursing: Making the most of each moment. Nursing. 1993:50-55.

Varni JW, Katz ER, Seid M, Quiggins DJL, Friedman-Bender A, The American Cancer Society. The pediatric cancer quality of life inventory-32 (PCQL-32). Cancer. 1998;82(6):1184-1196.

Vickers JL, Carlise C. Choices and control: Parental experiences in pediatric terminal home care. Journal of Pediatric Oncology Nursing. 2000;17(1):12-21.

Weir RF, Peters C. Affirming the decisions adolescents make about life and death. Hastings Center Report. 1997;27(6):29-40.

Withholding or Withdrawing Life Saving Treatment in Children - a framework for practice. London: Royal College of Paediatrics and Child Health, 1997.

Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Slaem-Schatz S, Emanuel EJ, Weeks JC. Symptoms and suffering at the end of life in children with cancer. New England Journal of Medicine. 2000;342:326-333.