Resolve Through Sharing Bereavement Services annual professional training workshop: "Blueprint for a Perinatal Palliative Care Program®: Caring for families who continue the pregnancy after their baby is diagnosed with a life-limiting condition," held annually in August. Also, "Blueprint for a Perinatal Palliative Care Program®: The Basics." Gundersen Health System, La Crosse, Wisconsin.
RTS Bereavement Services,
clinically based professional training for caregivers, including
training in general perinatal loss and perinatal palliative care. Gundersen Health System, La Crosse, Wisconsin
Gundersen Health System Resolve Through Sharing Bereavement Services webinars including "Perinatal palliative care: Planning in advance and systems support," "Comfort care for babies with life-limiting conditions: Using the neonatal advance directive," and "Life-threatening diagnosis: What do I say next?"
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.
Perinatal hospice video for
caregivers, by Tammy Ruiz RN, perinatal bereavement coordinator at Mary
Washington Hospital, Fredericksburg, Virginia. Also translated into Spanish, Italian, French, 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.
Boss R, Kavanaugh K., Kobler K. Prenatal and neonatal palliative care. Chapter 37 in Wolfe J, Hinds P, Sourkes B (Eds.), Textbook of Interdisciplinary Pediatric Palliative Care. Elsevier, 2011, pp. 387-401.
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.
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.
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.
Hospice and Palliative Nurses Association online chat, 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.
Iles S, Gath D. Psychiatric outcomes of termination of pregnancy for foetal abnormality. Psychological Medicine 1993 May;23(2):407-13.
Janvier A, Barrington K, Farlow B. Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology. Semin Perinatol. 2014 Feb;38(1):38-46.
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.
Kiman R, Doumic L. Perinatal palliative care: A developing specialty. International Journal of Palliative Nursing, 2014 Mar 28;20(3):143-8.
Kobler K, Limbo R. Making a Case: Creating a perinatal palliative care service using a perinatal bereavement program model. Journal of Perinatal & Neonatal Nursing, January/March 2011, Vol. 25, Issue 1.
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.
MCN: The American Journal of Maternal/Child Nursing, special issue devoted to the topic of perinatal and pediatric bereavement. May/June 2014
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.
Miller LH, Lindley LC, Mixer SJ, Fornehed ML, Niederhauser VP. Developing a perinatal memory-making program at a children's hospital. MCN Am J Matern Child Nurs. 2014 Mar-Apr; 39(2):102-6.
Detoxifying death in the neonate: in search of meaningfulness at
the end of life. J Perinatol. 2003 Jun;23(4):333-6.
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.
Murdoch E, Carragher P, McNamara K. Perinatal Palliative Care Framework: Goals and Standards for Perinatal Palliative Care, and NHS Scotland Regional Managed Clinical Network for Neonatal Services, December 2013
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.
Rychik J. What Does Palliative Care Mean in Prenatal Diagnosis of Congenital Heart Disease? World J Pediatr Congenit Heart Surg. 2013 Jan;4(1):80-4.
Samsel S, Lechner BE. End-of-life care in a regional level IV neonatal intensive care unit after implementation of a palliative care initiative. J Perinatol. 2015 Mar;35(3):223-8.
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.