Online chat sponsored by the Hospice and Palliative Nurses Association, featuring Rana Limbo of Bereavement Services/Resolve Through Sharing and the Pregnancy Loss and Infant Death Alliance (PLIDA) answering questions about perinatal bereavement and perinatal palliative care.
Children's Project on Palliative/Hospice Services(CHiPPS) Pediatric Palliative Care Newsletter, Perinatal Palliative and Hospice Care. A project of the National Hospice and Palliative Care Organization. Issue 30, February 2013.
Wool C. State of the Science on Perinatal Palliative Care. J Obstet Gynecol Neonatal Nurs. 2013 Apr 11. doi: 10.1111/1552-6909.12034. [Epub ahead of print].
E-mail listserv for caregivers interested in providing perinatal hospice/palliative care for families who receive a life-limiting prenatal diagnosis. List currently has more than 300 members. Request to join here.
RTS Bereavement Services,
clinically based professional training for caregivers, including
training in general perinatal loss and perinatal palliative care. Gundersen Lutheran Bereavement
Services, La Crosse, Wisconsin.
Perinatal hospice video for
caregivers, by Tammy Ruiz RN, perinatal bereavement coordinator at Mary
Washington Hospital, Fredericksburg, Virginia. Also translated into Spanish, Italian, Czech, Japanese, and Polish.
Video by Perinatal Palliative Care, a network of hospitals and clinics in Australia, with more videos and information on their website.
Breeze AC, Lees CC. Antenatal diagnosis and management of life-limiting conditions. Seminars in Fetal and Neonatal Medicine April 2013; 18(2):68-75.
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.
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.
DNSc FNP FAAN, a professor of nursing at Sonoma State University in
is also available as an ethics, research, and
practice consultant for perinatal palliative care.)
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.
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.
Côte-Arsenault D, Denney-Koelsch E. 'My baby is a person': Parents' experiences with life-threatening prenatal diagnosis. Journal of Palliative Medicine Vol 13, No. 12, 2011, 1-7.
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.
English NK and Hessler KL. Prenatal Birth Planning for Families of the Imperiled Newborn. Journal of Obstetric, Gynecologic, & Neonatal Nursing. (2013) doi: 10.1111/1552-6909.12031
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.
"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.
Kilby M, Pretlove S, Bedford Russel A. Multidisciplinary palliative care in unborn and newborn babies. BMJ 2011;342:d1808.
Lindley LC, Fornehed ML, Mixer SJ. A comparison of the nurse work environment between perinatal and non-perinatal hospice providers. International Journal of Palliative Nursing 2013, Vol. 19, No. 11, pp. 535-540.
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.
Marc-Aurele KL, Nelesen R. A five-year review of referrals for perinatal palliative care. Journal of Perinatology, online ahead of print Sept. 4, 2013, doi:10.1089/jpm.2013.0098.
Marron-Corwin MJ, Corwin D. When tenderness should replace technology: The role of perinatal hospice. NeoReviews, Vol. 9 No. 8 2008 e348.
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.
Storme L, De Mézerac
I. L'accompagnement des parents face à une mort annoncée en périnatalité: pour l'introduction d'une démarche de soins palliatifs en maternité et en néo-natologie. (Dealing with parents facing imminent death of their neonate: introducing palliative care in maternity wards and neonatal intensive care units.) Bull. Acad. Natle Méd., June 2010, 194(6):879-890.
Sudia-Robinson, T. Ethical implications of newborn screening, life-limiting conditions, and palliative care. MCN, The American Journal of Maternal-Child Nursing, May/June 2011.
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 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.
Thiele P, Blair S. Destined to die: At 18 weeks’ gestation Pauline Thiele’s baby was diagnosed with trisomy 18, a usually lethal syndrome. Her problems began when she chose not to terminate the pregnancy. BMJ 2011;343:d3625.
Toce S, Collins MA.The FOOTPRINTS model of pediatric palliative care.J Palliat Med. 2003 Dec;6(6):989-1000.
Are Not Alone," a video
for parents facing decisions about aggressive medical intervention in the NICU. Denver, Colo.; Colorado Trust,
The Colorado Collective for Medical Decisions' Neonatal Subcommittee,
Nickel's Worth Productions, 1998.
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.