BIBLIOGRAPHY
1.
American Academy of Pediatrics, Committee on Bioethics and
Committee on Hospital Care. Palliative Care for Children. Pediatrics
2000;106:351-7
2.
Armstrong-Dailey A. Children's hospice: completing the
circle of caring. Caring. 1994;13(12):72-76, 78
3.
Bluebond-Langner M. The Private Worlds of Dying Children. Princeton,
NJ: Princeton University Press; 1978
4. Bouffet E, Zucchinelli V, Costanzo P, Blanchard P. Schooling as a part of palliative care in paediatric oncology. Palliat Med. 1997;11(2):133-139
5.
Dailey AA, Goltzer SG. Hospice Care for Children. Oxford University
Press, New York, 1993
6.
Davies B, Steele R. Challenges in identifying children for
palliative care. J Palliat Care. 1996;12(3):5-8
7.
Faulkner K. Pediatric hospice reference library. Am J Hosp
Palliat Care. 1997;14(5):228-230
8.
Forward SP, Brown TL, McGrath PJ. Mothers' attitude and
behavior toward medicating children's pain. Pain. 1996;67(2-3):469-474
9.
Frager G. Pediatric palliative care: building the model,
bridging the gaps. J Palliat Care. 1996;12(3):9-12
10.
Goldman A. (ed) Care of the Dying Child. Oxford University
Press, Oxford; 1994
11.
Goldman A. ABC of palliative care. Special problems of
children. BMJ. 1998;316(7124):49-52
12.
Goldman A. Home care of the dying child. J Palliat Care.
1996;12(3):16-19
13.
Kopecky EA, Jacobson S, Joshi P, Martin M, Koren G. Review
of a home-based palliative care program for children with malignant and
non-malignant diseases. J Palliat Care. 1997 Winter; 13(4):28-33
14.
Kristjanson LI, Sloan JA, Dudgeon D, Adaskin E. Family
members' perceptions of palliative cancer care: predictors of family
functioning and family members' health. J Palliat Care. 1996;12(4):10-20
15.
Lauer M. Ongoing challenges in pediatric hospice care. Acta
Paediatrica. 1997;86(10):1037-1039
16.
Levetown M. Palliative care in the intensive care unit. New Horiz
1998;6:383-97
17.
Liben S. Pediatric palliative medicine: obstacles to
overcome. J Palliat Care. 1996;12(3):24-28
18.
Martinson I. An international perspective on palliative care
for children. J Palliat Care. 1996;12(3):13-15
19.
McGrath PA. Development of the World Health Organization
Guidelines on Cancer Pain Relief and Palliative Care in Children. J Pain
Symptom Manage. 1996;12(2):87-92
20.
McGrath PJ, Finley GA. Attitudes and beliefs about
medication and pain management in children. J Palliat. Care. 1996;12(3):46-50
21.
McQuillan R, Finaly I. Facilitating the care of terminal ill
children. J Pain Symptom Manage. 1996;12(5):320-324
22.
Morgan ER, Murphy SB. Care of children who are dying of
cancer. N Engl J Med 2000;342:347-8
23.
Parker D, Maddocks I, Stern L. The role of palliative care
in advanced muscular dystrophy and spinal muscular atrophy. J Paediatr Child
Health. 1999;35(3):245-250
24.
Raftery JP, Addington-Hall JM, MacDonald LD, Anderson HR,
Bland JM, Chamberlain J, Freeling P. A randomized controlled trial of the cost
effectiveness of a district coordinating service for terminally ill cancer
patients. Palliat Med. 1996;10(2):151-161
25.
Robinson WM, Ravilly S, Berde C, Wohl ME. End-of-life care
in cystic fibrosis. Pediatrics. 1997;100(2 Pt 1):205-209
26.
Stein A, et al. Life threatening illness and hospice care.
Arch Dis Child 1989
27.
Stevens MM, Jones P, O'Riordan E. Family responses when a
child with cancer is in palliative care. J Palliat Care. 1996;12(3):51-55
28.
Wolfe J, Grier HE, Klar N, et. al. Symptoms and suffering at
end of life in children with cancer. N Engl J Med. 2000; 342:326-33
1.
American Academy of Pediatrics Committee on Child Abuse and
Neglect and Committee on Community Health Services. Investigation and Review of
Unexpected Infant and Child Deaths. Pediatrics. 1993;92(5):734-5
2.
Corr C, Corr D. Pediatric Hospice Care. Pediatrics.
1985;76(5):774-780
3.
Cowley LT, Young E, Raffin TA. Care of the dying: An ethical
and historical perspective. Crit Care Med. 1992;20(10):1473-1482
4.
Miller F, Fins J. Sound Board: A proposal to restructure
hospital care for dying patients. N Engl J Med. 1996;334(26):1740-1742
1.
Ashwal S. Brain death in the newborn. Clin Perinatol.
1997;24(4):859-882
2.
Farrell M, Levin D. Brain death in the pediatric patient:
Historical, sociological, medical, religious, cultural, legal, and ethical
considerations. Crit Care Med. 1993;21(12):1951-1965
1.
Ahrens W, Hart R, Maruyama N. Pediatric death: managing the
aftermath in the emergency department. J Emerg Med. 1997;15(5):601-603
2.
Ahrens W, Hart R. Emergency physicians' experience with
pediatric death. Am J Emerg Med. 1997;15(7):642-643
3.
Ali S. Euology for Amanda. Am J Hosp Palliat Care. 1997;14(5):246-247
4.
American Academy of Pediatrics Committee on Psychosocial
Aspects of Child and Family Health. The pediatrician and childhood bereavement.
Pediatrics. 2000;105(2):445-447
5.
Behnke M, Reiss J, Neimeyer G, Bandstra E. Grief responses of
pediatric house officers to a patient's death. Death Stud. 1987;11(3):169-176
6.
Carroll M, Griffin R. Reframing life's puzzle: support for
bereaved children. Am J Hosp Palliat Care. 1997;14(L5):231-235
7.
DeMaso D, Meyer E, Beasley P. What do I say to my surviving
children? J Am Acad Child Adolesc Psychiatry. 1997;36(9):1299-1302
8.
Finlay I, Dallimore D. Your child is dead. BMJ.
1991;302(6791):1524-1525
9.
Gillance H, Tucker A, Aldridge J, Wright J. Bereavement:
providing support for siblings. Paediatr Nurs. 1997;9(5):22-24
10.
Kissane D, McKenzie D, Bloch S. Family coping and
bereavement outcome. J Palliat Med. 1997;11(3):191-201
11.
Leon I. Perinatal loss. A critique of current hospital
practices. Clin Pediatr. 1992;31(6):366-374
12.
Nicol M, Tompkins J, Campbell N, Syme G. Maternal grieving
response after perinatal death. Med J Aust. 1986;144(6):287-289
13.
Showalter S. Now I lay me down to sleep. Remembering Walter:
a child preparing to die. Am J Hosp Palliat Care. 1997;14(5):239-243
14.
Sormanti M, August J. Parental bereavement: spiritual
connections with deceased children. Amer J Orthopsychiatry. 1997;67(3):460-469
15.
Sourkes B. The broken heart: anticipatory grief in the child
facing death. J Palliat Care. 1996;12(3):56-59
16.
Stevens M, Jones P, 0'Riordan E. Family responses when a
child with cancer is in palliative care. J Palliat Care. 1996;12(3)51-55
17.
Stokes J, Wyer S, Crossley D. The challenge of evaluating a
child bereavement programme. J Palliat Med. 1997;11(3):179-190
18.
Weiss L, Frischer L, Richman J. Parental adjustment to
intrapartum and deliver room loss. The role of a hospital-based support
program. Clin Perinatol. 1989;16(4):1009-1019
19.
Wharton R, Levine K, Jellenik M. Pediatrician's role after hospital-based
death and permanent disability in school-aged children. Clin Pediatr. 1993;
32(11) :675-680
20.
Wolfe J. Hospice support for families facing multiple deaths
of children. Am J Hosp Palliat Care. 1997;14(5):224-227
1.
American Academy of Pediatrics, Committee on Bioethics.
Ethics and the care of critically ill infants and children. Pediatrics.
1996;98(1):149-152
2.
American Academy of Pediatrics, Committee on Bioethics.
Informed consent, parental permission, and assent in pediatric practice. Pediatrics.
1995;95(2):314-317
3.
Bartholome W. Care of the dying child: The demands of
ethics. Second Opinion. 1993;18(4)25-38
4.
Harrison C, Kenny N, Sidarous M, Rowell M. Bioethics for
clinicians: 9. Involving children in medical decisions. CMAJ. 1997;156(6):825-828
5.
King N, Cross A. Children as decision-makers: Guidelines for
pediatricians. J Pediatr. 1989;115(1):10-16
6.
Levetown M, Carter M. Child-centred care in terminal
illness: an ethical framework. In: Doyle D, Hanks GWC, MacDonald N, eds. Oxford
Textbook of Palliative Medicine. 2"d ed. New York, NY: Oxford University
Press; 1998:1107-1117
7.
Levetown M. Ethical aspects of pediatric palliative care. J
Palliat Care. 1996;12(3):35-39
8.
Rushton C, Glover J. Involving parents in decisions to
forego life-sustaining treatment for critically ill infants and children. AACN
Clin Issues Crit Care Nurs. 1990;1(1):206-214
1.
American Academy of Pediatrics, Committee on Bioethics.
Guidelines on forgoing life-sustaining medical treatment. Pediatrics.
1994;93(3):532-536
2.
Clark F. Intensive care treatment decisions: The roots of
our confusion. Pediatrics. 1994;94(1):98-101
3.
Fleischman A, Nolan K, Dubler N, et al. Caring for gravely
ill children. Pediatrics. 1994;94(4):433-439
4.
Lantos J, Berger A, Zucker A. Do-not-resuscitate orders in a
children's hospital. Crit Care Med. 1993;21(1):52-55
5.
Meisel A. Legal myths about terminating life support. Arch
Intern Med. 1991;151:1497-1502
6.
Randolph A, Zollo M, Egger M, et al Variability in physician
opinion on limiting pediatric life support. Pediatrics. 1999;103(4):1-8
1.
American Academy of Pediatrics, Committee on Fetus and
Newborn. The initiation or withdrawal of treatment for high-risk newborns.
Pediatrics. 1995;96(2):362-363
2.
American Academy of Pediatrics, Committee on Fetus and
Newborn; American College of Obstetricians and Gynecologists Committee on
Obstetric Practice. Perinatal care at the threshold of viability. Pediatrics.
1995;96(5):974-976
3.
Cook L, Watchko J. Decision making for the critically ill
neonate near the end of life. J Prenatal. 1996~16~21:133-136
4.
3, Goldsmith J,
Ginsberg H, McGettigan M. Ethical decisions in the delivery room. Clin Perinator. 1996;23(3):529-50
5.
Paris 3, Crone R, Reardon IF. Physicians' refusal of
Requested Treatment. -he case of Baby L. N Engl J Med. 1990;322(14):1012-1015
6.
Sexson W, Overall S. Ethical decision making in perinatal
asphyxia. Clin Perinatol. 1996;23(3):509-18
7.
Sexson W, Thigpen J. Organization and function of a hospital
ethics committee. Clin Perinator. 1996;23(3):429-36
1.
Balaban R. A physician's guide to talking about end-of-life
care. J Gen Intern Med. 2000;15:195-200
2.
Buckman R. How to break bad news: A guide for health care
professionals. John Hopkins University Press, 1992
3.
Krahn G, Hallum A, Kime C. Are there good ways to give 'bad
news'? Pediatrics. 1993;91(3):578-582
1.
American Academy of Pediatrics, Committee on Pediatrics
Workforce. Culturally effective pediatric care: Education and training issues. Pediatrics.
1999;103(1):167
2.
Sahler OJ, Frager G, Levetown M, et al. Medical education
about end-of-life care in the pediatric setting: Principles, challenges, and
opportunities. Pediatrics. 2000;105(3):575-584
1.
Cassell E. Diagnosing suffering:, a perspective. Ann Intern
Med. 1999;131(7):531-534
2.
Cassell E. The Nature of Suffering and the Goals of
Medicine. New York, NY: Oxford University Press, 1991
3.
Fadiman A. The Spirit catches you and you fall down.
Noonday. New York. 1997.
4.
Hallenbeck J, Goldstein M. Decisions at the end of life:
Cultural considerations beyond medical ethics. Generations. 1999;23(1):24-29
5.
Lipson J, Dibble S, Minarik P. Culture & Nursing Care: a
pocket guide. UCSF Nursing Press. SF. 1996
6.
Loudon R, Anderson P, Singh G, et al. Educating medical
students for work in culturally diverse societies. ]AMA. 1999;282(9):875-880
7.
Puchalski C, Romer A. Taking a spiritual history allows
clinicians to understand patients more fully. J Palliat Med. 2000;3(1):129-137
1.
American Academy of Pediatrics, Committee on Pediatric
Emergency Medicine. Emergency preparedness for children with special health
care needs. Pediatrics. 1999;104(4):e53
2.
Wharton R, Levine K, Buka S, et al. Advance care planning
for children with special health care needs: a survey of parental attitudes.
Pediatrics. 1996;97(5):682-7
1.
American Academy of Pediatrics, Committee on Fetus and
Newborn, Committee on Drugs, Section on Anesthesiology, Section on Surgery.
Prevention and Management of Pain and Stress in the Neonate. Pediatrics. 2000;105(2):454-461
2.
Beyer J, Wells N. The assessment of pain in children.
Pediatr Clin North Am. 1989; 36:837-854
3.
Collins J, Grier H, Kinney H, et al. Control of severe pain
in children with terminal malignancy. J Pediatr. 1995;126(4):653-657
4.
Collins J. Intractable pain in children with terminal
cancer. J Palliat Care. 1996;12(3):29-34
5.
Cummings E, Reid G, Finley G, et al. Prevalence and source of
pain in pediatric inpatients. Pain. 1996;68(1):25-31
6.
Kain Z, Rimar S. Management of chronic pain in children.
Pediatr Rev. 1995;16(6):218-222
7.
Kenny N, Frager G. Refractory symptoms and terminal sedation
of children: ethical issues and practical management. J Palliat Care.
1996;12(3):40-45.
8.
McGrath P, et al. A new analogue scale for assessing
children's pain: an initial validation study. Pain. 1996;64(3):435-443
9.
McGrath P, Finley G. Attitudes and beliefs about medication
and pain management in children. J Palliat Care. 1996;12(3):46-50
10.
Post L, Blustein J, Gordon E, Dubler N. Pain: Ethics,
culture and informed consent to relief. J Law Med Ethics. 1996;24:348-359
1.
Saigal S, Stoskopf B, Feeny D, et al. Differences in
preferences for neonatal outcomes among health care professionals, parents, and
adolescents. JAMA. 1999;281(21):1991-1997
2.
Saigal S, Rosenbaum P, Feeny D, et al. Parental perspectives
of the health status and health-related quality of life of teen-aged children
who were extremely low birth weight and term controls. Pediatrics.
2000;105(3):569574
3.
Hack, M. Consideration of the use of health status,
functional outcome, and quality-of-life to monitor neonatal intensive care
practice. Pediatrics. 1999;103(1):319-328
1.
Paris J, Singh J, Schreiber M, et al. Unilateral
dc-not-resuscitate order in the neonatal intensive care unit. J Perinatol.
1999;19(5):383-387
2.
Tomlinson T, Brody H. Ethics and communication in
do-not-resuscitate orders. N Engl J Med. 1988;318(1):43-46
3.
Ginsberg H, Goldsmith J. Controversies in neonatal
resuscitation. Clin Perinatol. 1998;25(1):1-15
4.
Boyle R, Kattwinkel J. Ethical issues surrounding
resuscitation. Clin Perinatol. 1999;26(3):779-792
5.
Meadow W, Katznelson J, Rosen T, et al. Putting futility to use
in the NICU: ethical implication of non-survival after CPR in very
low-birth-weight infants. Acta Paediatr. 1995;84:589-592