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Medical journals and professional resources
References relevant to perinatal hospice and palliative care
Birth plan, in-house comfort care orders, and discharge comfort care orders from St. Joseph Health System's Perinatal Comfort Care Program, Orange, California. (Orders adapted from USCF Medical Center for use at St. Joseph Hospital; posted here with permission)
Buus-Frank ME. Sometimes a time to be born is also a time to die. Adv Neonatal Care 2006 Feb;6(1):1-3.
Breeze AC, Lees CC, Kumar A, Missfelder-Lobos HH, Murdoch EM.
Palliative care for prenatally diagnosed lethal fetal abnormality. Archives of Disease in Childhood - Fetal and Neonatal Edition 2007 Jan;92:F56-F58.
Brosig CL, Pierucci RL, Kupst MJ, Leuthner SR. Infant end-of-life care: the parents' perspective. Journal of Perinatology. 2007; 27:510-516.
Calhoun BC, Napolitano P, Terry M, Bussey C, Hoeldtke NJ. Perinatal hospice: Comprehensive care for the family of the fetus with a lethal condition. J Reprod Med. 2003 May;48(5):343-8.
Calhoun BC, Hoeldtke NJ, Hinson RM, Judge KM. Perinatal hospice: should all centers have this service? Neonatal Netw. 1997 Sep;16(6):101-2.
Calhoun BC, Hoeldtke NJ. The Perinatal Hospice: Ploughing the Field of Natal Sorrow. Frontiers in Fetal Health 2000; 2(5).
Calhoun BC, Reitman JS, Hoeldtke NJ. Perinatal hospice: a response to partial birth abortion for infants with congenital defects. Issues in Law and Medicine 1997; 13(2):125-143.
Carroll K. The Miracle of Time. Supportive Voice. Winter 2004; Vol. 10, No. 1.
Carter BS, Levetown M. Eds. Palliative Care for Infants, Children, and Adolescents: A Practical Handbook. Baltimore, MD. Johns Hopkins University Press, 2004.
Carter B. Comfort care principles for the high-risk newborn. NeoReviews, Vol. 5 No. 11 2004 e484.
Carter BS. Comfort/palliative care guidelines for neonatal practice: Development and implementation in an academic medical center. Journal of Perinatology. 2001; 21:279-283.
Carter BS. Neonatal and Infant Death: What Bereaved Parents Can Teach Us. Journal of Perinatology. 2007; 27:467-468.
Catlin A. Bringing Perinatal Palliative Care to the Forefront: One Nurse's View. Journal of Hospice & Palliative Nursing. 2004 Jul/Aug/Sep; 6(3):142-143.
Catlin A, Carter BS. Creation of a Neonatal End-of-Life Palliative Care Protocol, Journal of Perinatology. 2002; 22(3):184-195.
Catlin A. Home Care for the High-Risk Neonate. Home Healthcare Nurse. 2007 Feb; 25(2):1-5.
Catlin A. Thinking outside the box: Prenatal care and the call for a prenatal advance directive. J Perin Neonat Nurs 2005 Vol. 19, No. 2, pp. 169-176.
Clark WD. Pregnancy care: An apprenticeship for palliative care? J Am Board Fam Med. 2008 Jan-Feb;21(1):63-5.
Corr C, Torkildson C eds. Perinatal Loss. ChiPPS Pediatric Palliative Care Newsletter. From E-News, a program of the National Hospice and Palliative Care Organization. 2007 Feb;(6):1-22.
Chitty LS, Barnes CA, Berry C. For Debate: Continuing a pregnancy after a diagnosis of lethal abnormality: experience of five couples and recommendations for management. British Medical Journal 1996 Aug. 24;313:478-480.
D'Almeida MD, Hume RF, Lathrop A, Njoku A, Calhoun BC. Perinatal Hospice: Family-Centered Care of the Fetus with a Lethal Condition. Journal of American Physicians and Surgeons Vol. 11, No. 2, Summer 2006. (pdf includes sample birth plan)
Dangel T. Lethal Defects in Foetuses and Neonates: Palliative Care as an Alternative to Eugenic Abortion, Eugenic Infanticide, and Therapeutic Obstinacy. The Warsaw Hospice for Children Foundation. Download pdf
Davies V et al. Psychological outcome in women undergoing termination of pregnancy for ultrasound-detected fetal anomaly in the first and second trimesters: a pilot study. Ultrasound Obstet Gynecol. 2005 Apr;25(4):389-92.
Davis DL. Providing emotionally supportive care to parents as they face decisions after prenatal diagnosis of a baby’s life-limiting condition. ChiPPS E-News, Children’s Project on Palliative/Hospice Services Pediatric Palliative Care Newsletter, May 2007; Issue 7, p. 22.
Field MJ, Behrman RE. Eds. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, D.C.: Institute of Medicine, The National Academies Press, 2002.
Davis DL. Providing emotionally supportive care to parents as they face decisions after prenatal diagnosis of a baby’s life-limiting condition. ChiPPS E-News, Children’s Project on Palliative/Hospice Services Pediatric Palliative Care Newsletter, May 2007; Issue 7, p. 22.
Gale G, Brooks A. A Parents’ Guide to Palliative Care. Adv Neonatal Care, 2006 Feb;6(1):54-55.
Gale G, Brooks A. Implementing a palliative care program in a newborn intensive care unit. Adv Neonatal Care 2006 Feb;6(1):37-53.
Gale G, Brooks A. Obstacles to optimal palliative care in the labor and delivery unit. ChiPPS E-News, Children’s Project on Palliative/Hospice Services Pediatric Palliative Care Newsletter, May 2007; Issue 7, p. 16.
Goulette C. "Guardians of Angels." Advance for Nurses, www.advanceweb.com, June 2008.
Hochberg T. "Touching Souls: Healing with Bereavement Photography," The Forum newsletter of the Association for Death Education and Counseling. 2003 Apr/May/Jun; 29(2),
Hoeldtke NJ, Calhoun BC. Perinatal hospice. Am J Obstet Gynecol. 2001 Sep;185(3):525-9.
Horning ML, Braun CA. The lived experience of families who are told their child will die at or shortly after birth. Journal of Undergraduate Nursing Scholarship. Fall 2006, Vol. 8, No. 1.
Perinatal hospice programs provide support for families facing a newborn's death, Hospice Letter, June 2008, pp. 4-5.
Iles S, Gath D. Psychiatric outcomes of termination of pregnancy for foetal abnormality. Psychological Medicine 1993 May;23(2):407-13.
Kenyon SL, Hackett GA, Campbell S. Termination of pregnancy following diagnosis of fetal malformation: the need for improved follow-up services. Clin Obstet Gynecol. 1988 Mar;31(1):97-100.
Kersting A. et al. Psychological impact on women after second and third trimester termination of pregnancy due to fetal anomalies versus women after preterm birth—a 14-month follow up study. Arch Womens Ment Health. 2009 Aug;12(4):193-201.
Kersting A et al. Grief after termination of pregnancy due to fetal malformation.J Psychosom Obstet Gynaecol. 2004 Jun;25(2):163-9.
Kersting A et al.Trauma and grief 2-7 years after termination of pregnancy because of fetal anomalies--a pilot study.Psychosom Obstet Gynaecol. 2005 Mar;26(1):9-14.
Kuebelbeck
A. "Perinatal Hospice: A Holistic Approach for When Death Comes at the
Beginning of Life," The Forum newsletter of the Association for Death
Education and Counseling, 2005 Jan/Feb/Mar; 31(1).
Leuthner S, Jones EL. Fetal Concerns Program: A model for perinatal palliative care. MCN Am J Matern Child Nurs. 2007 Sept/Oct;32(5):272-278.
Leuthner SR. Fetal palliative care. Clin. Perin. 2004; 31(3):649-665.
Leuthner SR. Palliative care of the infant with lethal anomalies. Pediatr Clin N Am. 2004; 51(3):747-759.
Limbo R, Toce S, Peck T. Resolve Through Sharing position paper on perinatal palliative care, Gunderson Lutheran Medical Foundation, August 2008.
Locock L, Crawford J, Crawford J. The parents' journey: Continuing a pregnancy after a diagnosis of Patau's Syndrome. British Medical Journal 2005 Nov.19;331:1186-1189.
Marron-Corwin MJ, Corwin D. When tenderness should replace technology: The role of perinatal hospice. NeoReviews, Vol. 9 No. 8 2008 e348.
Moore DB, Catlin A. Lactation Supression: Forgotten Aspect of Care for the Mother of a Dying Child. Pediatric Nursing, Sept/Oct 2003;29(5):363-364.
Munson D, Leuthner SR. Palliative Care for the Family Carrying a Fetus with a Life-Limiting Diagnosis. Pediatr Clin N Am 54 (2007) 787-798.
National Hospice and Palliative Care Organization Universal Principles of Pediatric Palliative Care, Children's International Project on Palliative/Hospice Services, 2000
Palmer K. Peace and Pain. British Medical Journal 1994 July 23;309:279.
Pearce EWJ. Perinatal Hospice/Supportive Care for the Dying Unborn Infant. Supportive Voice, newsletter of the Supportive Care Coalition: Pursuing Excellence in Palliative Care, Summer 1999.
Pearce EWJ. Presentation on Alexandra's House Perinatal Hospice given to the Missouri section of the American College of Obstetricians and Gynecologists, March 2006.
Pierucci R, Kirby S, Leuthner S. End-of-Life Care for Neonates and Infants: The Experience and Effects of a Palliative Care Consultation Service. Pediatrics Vol. 108 No. 3 September 2001, pp. 653-660.
Ramer-Chrastek J, Thygeson MV..A perinatal hospice for an unborn child with a life-limiting condition. Int J Palliat Nurs. 2005 Jun;11(6):274-6.
Reitman JS, Calhoun BC, Hoeldtke NJ. Perinatal Hospice: A response to early termination for severe congenital anomalies. In TJ Demy, GP Stewart, Eds., Genetics and Reproductive Technology: A Christian Response. Grand Rapids, MI: Kregel Books, 1999:197-211.
Roush A, Sullivan P, Cooper R, McBride J. Perinatal Hospice. Newborn and Infant Nursing Reviews. 2007 Dec;7(4):216-221.
Stokowski LA. Palliative Care and Neonatal Loss. From highlights of the National Association of Neonatal Nurses (NANN) 20th annual conference, Oct. 13-16, 2004, published online by Medscape Today.
Sumner LH. "Pediatric Care: The Hospice Perspective," in Textbook of Palliative Nursing. BR Ferrel, N Coyle, Eds. New York : Oxford University Press, 2001.
Sumner LH. Perinatal Hospice Services/Early Intervention Program purpose and procedures pdf, 2006.
Sumner L. Perinatal palliative care: Lighting the way for families through a difficult but sacred journey of beginnings and endings. ChiPPS E-News, Children’s Project on Palliative/Hospice Services Pediatric Palliative Care Newsletter, May 2007; Issue 7, p. 2.
Sumner LH. Taking Palliative Care into Pregnancy and Perinatal Loss. National Perinatal Association Bulletin. 2004 Fall; 5(2).
Sumner LH, Kavanaugh K, Moro T. Extending palliative care into pregnancy and the immediate newborn period: state of the practice of perinatal palliative care. J Perinat Neonatal Nurs. 2006 Jan-Mar;20(1):113-6.
Terhaar M, ed. Palliative Approach to Perinatal and Neonatal Care. eNeonatal Review (a joint publication of The Johns Hopkins University School of Medicine and The Institute for Johns Hopkins Nursing) July 2006, Vol. 2, No. 11.
Toce S, Collins MA.The FOOTPRINTS model of pediatric palliative care.J Palliat Med. 2003 Dec;6(6):989-1000.
Tyler M. “Perinatal Palliative Care: A Collaborative Approach,” Greater Cleveland M.D. News, July/August 2008, p. 11.
Walker LV, Miller VJ, Dalto VK. The health-care experiences of families given the prenatal diagnosis of trisomy 18. Journal of Perinatology (2008) 28, 12-19.
Watkins D. An alternative to termination of pregnancy. Practitioner 1989 Jul 8;233(1472):990,992.
Weinhold O. Development of the Perinatal Concerns Program: Care of mothers after diagnosis of fatal infant anomalies. MCN Am J Matern Child Nurs. 2007 Jan-Feb;32(1):30-35.
Williams M. Neonatal Hospice Nursing, Part One: Outpatient and Part Two: Inpatient.
Wood D. Preparing expectant parents for perinatal death. www.NurseZone.com, Nov. 9, 2007.
Zeanah CH, Dailey JV, Rosenblatt MJ, Saller DN Jr. Do women grieve after terminating a pregnancy for fetal abnormalities? A controlled investigation. Obstetrics and Gynecology 1993 Aug;82(2):270-5.
References on medical ethics and decision-making
Arlettaz
R, Mieth D, Bucher HU, Duc G, Fauchere JC. End-of-life decisions in
delivery room and neonatal intensive care unit. Acta Paediatr. 2005
Nov;94(11):1626-31.
Anspach, RR. Deciding Who Lives: Fateful Choices in the Intensive Care Nursery. Berkeley: University of California Press, 1997.
Baergen
R. How Hopeful is Too Hopeful? Responding to Unreasonably Optimistic
Parents. Pediatric Nursing. 2006 Sep-Oct;32(5):482, 485-6.
Belkin L. First Do No Harm. New York: Simon and Schuster, 1993.
Catlin
A. Extremely long hospitalizations of newborns in the United States:
data, descriptions, dilemmas. J Perinatol. 2006 Dec;26(12):742-8.
Cohen RW. A Tale of Two Conversations. Hastings Center Report. May-June 2004, p. 49.
Copnell
B. Death in the pediatric ICU: caring for children and families at the
end of life. Crit Care Nurs Clin North Am. 2005 Dec;17(4):349-60, x.
Culver CM. Ethics at the Bedside. Hanover, N.H.: University Press of New England, 1990.
Dubler
N, Nimmons D. Ethics On Call: Taking Charge of Life-and-Death Choices
in Today’s Health Care System. New York: Vintage Books, 1993.
Ellenchild
Pinch, WJ. When the Bough Breaks: Parental Perceptions of Ethical
Decision-Making in NICU. Lanham, Md.: University Press of America,
2002.
Engler AJ, Cusson RM, Brockett RT, Cannon-Heinrich C,
Goldberg MA, West MG, Petow W. Neonatal staff and advanced practice
nurses' perceptions of bereavement/end-of-life care of families of
critically ill and/or dying infants. Am J Crit Care. 2004
Nov;13(6):489-98.
Frohock, FM. Special Care: Medical Decisions at the Beginning of Life. Chicago: University of Chicago Press, 1986.
Getz
L, Kirkengen AL. Ultrasound screening in pregnancy: advancing
technology, soft markers for fetal chromosomal aberrations, and
unacknowledged ethical dilemmas. Soc Sci Med. 2003 May;56(10):2045-57.
Guillemin JH, Holmstrom LL. Mixed Blessings: Intensive Care for Newborns. New York: Oxford University Press, 1986.
Gustaitis R, Young EWD. A Time to Be Born, A Time to Die. New York: Addison-Wesley, 1986.
Kon AA. Discussing Nonsurgical Care With Parents of Newborns With Hypoplastic Left Heart Syndrome. Newborn and Infant Nursing Reviews
June 2005;5(2):60-68.
Kon
AA, Ackerson L, Lo B: How pediatricians counsel parents when no
“best-choice” treatment exists: lessons to be learned from the
hypoplastic left heart syndrome. Arch Pediatr Adolesc Med
2004;158:436–441.
Lantos JD. The Lazarus Case: Life-and-Death Issues in Neonatal Intensive Care. Baltimore: Johns Hopkins University Press, 2001.
Lyon J. Playing God in the Nursery. New York: W. W. Norton, 1985.
Milstein
JM. Detoxifying death in the neonate: in search of meaningfulness at
the end of life. J Perinatol. 2003 Jun;23(4):333-6.
Orfali K.
Parental role in medical decision-making: fact or fiction? A
comparative study of ethical dilemmas in French and American neonatal
intensive care units. Soc Sci Med. 2004 May;58(10):2009-22.
Sayeed
SA. Baby doe redux? The Department of Health and Human Services and the
Born-Alive Infants Protection Act of 2002: a cautionary note on
normative neonatal practice. Pediatrics. 2005 Oct;116(4):e576-85.
Sharman
M, Meert KL, Sarnaik AP. What influences parents' decisions to limit or
withdraw life support? Pediatr Crit Care Med. 2005 Sep;6(5):513-8.
Singh
J, Lantos J, Meadow W. End-of-life after birth: death and dying in a
neonatal intensive care unit. Pediatrics. 2004 Dec;114(6):1620-6.
Walther
FJ. Withholding treatment, withdrawing treatment, and palliative care
in the neonatal intensive care unit. Early Hum Dev. 2005
Dec;81(12):965-72. Epub 2005 Nov 7.
"You Are Not Alone," a video
for parents facing difficult decisions. Denver, Colo.; Colorado Trust,
The Colorado Collective for Medical Decisions' Neonatal Subcommittee,
Nickel's Worth Productions, 1998.
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