Perinatal Hospice and Palliative Care
A Gift of Time
Medical journal articles and professional resources for caregivers
FEATURED RESOURCES FOR CAREGIVERS
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
Palliative
Care Toolkit and Position
Paper on Perinatal Palliative Care, from RTS Bereavement Services/Gundersen Lutheran Medical Foundation, and annual conference, Blueprint
for a Perinatal Palliative Care Program®.
Palliative care (supportive and end-of-life care): A framework for clinical practice in perinatal medicine and its accompanying report, from the British Association of Perinatal Medicine.
Engelder S, et al. A Model Program for Perinatal Palliative Services. Advances in Neonatal Care, February 2012; 12(1):28-36.
The Journal of Perinatal & Neonatal Nursing, January/March 2011, Vol. 25, Issue 1: "Bereavement." Articles include "Making a Case: Creating a perinatal palliative care service using a perinatal bereavement program model" (Kobler K, Limbo R); "Continuity and change in mothers’ narratives of perinatal hospice" (Lathrop A, VandeVusse L), and "The evolving science of care in perinatal loss" (Black BP, Howard E, Bakewell-Sachs S).
Collier R. Providing hospice in the womb. Canadian Medical Association Journal, Feb. 17, 2011.
Kuebelbeck A. A Gift of Time: Continuing a pregnancy when a baby's life is expected to be brief. National Association of Perinatal Social Workers NAPSW Forum, Spring 2013, Vol. 33, No. 2.
McGovern K. Continuing the pregnancy when the unborn child has a life-limiting condition. Chisholm Health Ethics Bulletin, Caroline Chisholm Centre for Health Ethics, Melbourne, Australia, Autumn 2012.
Warland J, Davis DL, et al (2011) Caring for families experiencing stillbirth: A unified position statement on contact with the baby. An international collaboration. Also available in Spanish.
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.
Palliative care (supportive and end-of-life care): A framework for clinical practice in perinatal medicine and its accompanying report, from the British Association of Perinatal Medicine.
Engelder S, et al. A Model Program for Perinatal Palliative Services. Advances in Neonatal Care, February 2012; 12(1):28-36.
The Journal of Perinatal & Neonatal Nursing, January/March 2011, Vol. 25, Issue 1: "Bereavement." Articles include "Making a Case: Creating a perinatal palliative care service using a perinatal bereavement program model" (Kobler K, Limbo R); "Continuity and change in mothers’ narratives of perinatal hospice" (Lathrop A, VandeVusse L), and "The evolving science of care in perinatal loss" (Black BP, Howard E, Bakewell-Sachs S).
Collier R. Providing hospice in the womb. Canadian Medical Association Journal, Feb. 17, 2011.
Kuebelbeck A. A Gift of Time: Continuing a pregnancy when a baby's life is expected to be brief. National Association of Perinatal Social Workers NAPSW Forum, Spring 2013, Vol. 33, No. 2.
McGovern K. Continuing the pregnancy when the unborn child has a life-limiting condition. Chisholm Health Ethics Bulletin, Caroline Chisholm Centre for Health Ethics, Melbourne, Australia, Autumn 2012.
Warland J, Davis DL, et al (2011) Caring for families experiencing stillbirth: A unified position statement on contact with the baby. An international collaboration. Also available in Spanish.
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.
VIDEOS FOR CAREGIVERS
Video by Perinatal Palliative Care, a network of hospitals and clinics in Australia, with more videos and information on their website.
Perinatal hospice video for caregivers, by Tammy Ruiz RN, perinatal bereavement coordinator at Mary Washington Hospital, Fredericksburg, Virginia.
"Perinatal Hospice: Comprehensive care model for families with fatal prenatal diagnoses." Presentation by Dr. Byron C. Calhoun at International Symposium on Maternal Health in September 2012, Dublin, Ireland.
MATERIALS FOR PATIENTS
A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief by Amy Kuebelbeck and Deborah L. Davis, Ph.D. (Johns Hopkins University Press, 2011), along with their other books, including:
- Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life (Kuebelbeck)
- Empty Cradle, Broken Heart: Surviving the Death of Your Baby (Davis)
Waiting for Birth and Death: Knowing your baby will not survive, brochure from RTS Bereavement Services/Gundersen Lutheran Medical Foundation, available in English and Spanish
Gift of a Lifetime brochure by Tammy Tate RN LCPC, available in English and Spanish
PERINATAL LOSS TRAINING AND SUPPORT FOR CAREGIVERS
Pregnancy Loss and Infant Death Alliance (PLIDA); professional networking and biennial International Conference on Perinatal and Infant Death.
Certification exam for perinatal loss care, National Board for Certification of Hospice and Palliative Nurses
National Perinatal Bereavement Conference
RTS Bereavement Services, clinically based professional training for caregivers, including perinatal palliative care training. Gundersen Lutheran Bereavement Services, La Crosse, Wisconsin. Annual conference: "Blueprint for a Perinatal Palliative Care Program: Caring for families who continue the pregnancy after their baby is diagnosed with a life-limiting condition."
Pregnancy Loss and Infant Death Alliance (PLIDA); professional networking and biennial International Conference on Perinatal and Infant Death.
Certification exam for perinatal loss care, National Board for Certification of Hospice and Palliative Nurses
National Perinatal Bereavement Conference
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. (posted here with permission; see disclaimer)
Balaguer A, Martín-Ancel A, Ortigoza-Escobar D, Escribano J, Argemi J. The model of palliative care in the perinatal setting: A review of the literature. BMC Pediatrics 2012, 12:25.
Bennett J, Dutcher J, Snyders M. Embrace: addressing anticipatory grief and bereavement in the perinatal population: a palliative care case study. J Perinat Neonatal Nurs. 2011 Jan-Mar;25(1):72-6.
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.
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.
Calhoun BC. Perinatal hospice: Compassionate and comprehensive care for families with lethal prenatal diagnosis. The Linacre Quarterly 77(2) (May 2010): 147–156.
Carey JC. Perspectives on the care and management of infants with trisomy 18
and trisomy 13: striving for balance. Curr Opin Pediatr. 2012 Oct 5. [Epub ahead
of print] PubMed PMID: 23044555.
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. Perinatal Hospice Care during the Antepartum Period. Journal of Obstetric, Gynecologic, & Neonatal Nursing. 2013 doi: 10.1111/1552-6909.12029
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.
(Anita Catlin DNSc FNP FAAN, a professor of nursing at Sonoma State University in California, 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.
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.
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. Practice recommendations for obstetric sonographers when parents are considering or pursuing perinatal hospice and palliative care, www.nicuparenting.org, 2013.
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
Fenton LJ. Trisomy 13 and 18 and quality of life: Treading "softly". Am J Med Genet Part A, 2011.
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.
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.
Kilby M, Pretlove S, Bedford Russel A. Multidisciplinary palliative care in unborn and newborn babies. BMJ 2011;342:d1808.
Kuebelbeck A. A Gift of Time: Continuing a pregnancy when a baby's life is expected to be brief. CHiPPS Pediatric Palliative Care Newsletter (Children's Project on Palliative/Hospice Services, a project of the National Hospice and Palliative Care Organization). February 2013
Kuebelbeck A. Waiting with Gabriel. Current Problems in Pediatric and Adolescent Health. 2011 April;41(4):113-4.
Kuebelbeck A. A Gift of Time: Continuing a pregnancy when a baby's life is expected to be brief. National Association of Perinatal Social Workers NAPSW Forum, Spring 2013, Vol. 33, No. 2.
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).
Lathrop A, VandeVusse L. Affirming Motherhood: Validation and invalidation in women's perinatal hospice narratives. Birth, 2011 September;38(3):256-265.
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.
Milstein JM. 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.
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.
Parravicini E. Is 'comfort' care a 'medical' care? Observations on a neonatal population. Journal of Medicine and the Person. Published first online Jan. 18, 2012.
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.
Perinatal Palliative Care Framework MCN (South East Scotland), togetherforshortlives.org.uk
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 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.
Thiele P. He was my son, not a dying baby. J Med Ethics 2010 36:646-647.
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.
Tyler M. “Perinatal Palliative Care: A Collaborative Approach,” Greater Cleveland M.D. News, July/August 2008, p. 11.
"You 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.
Williams M. Neonatal Hospice Nursing, Part One: Outpatient and Part Two: Inpatient.
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]
Wool C., Dudek M. Exploring the Perceptions and the Role of Genetic Counselors in the Emerging Field of Perinatal Palliative Care. J Genet Couns. 2013 Apr 18. [Epub ahead of print]
Wool C. Clinician confidence and comfort in providing perinatal palliative care. Journal of Obstetric, Gynecologic and Neonatal Nursing 2013 Jan;42(1):48-58.
Wool C. Systematic Review of the Literature: Parental Outcomes After Diagnosis of Lethal Fetal Anomaly. Advances in Neonatal Care 2011 June;11(3):182-192.
Wool C, Northam S. The Perinatal Palliative Care Perceptions and Barriers Scale Instrument©: Development and validation. Advances in Neonatal Care 2011 Dec;11(6):397-403.
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.
Birth plan, in-house comfort care orders, and discharge comfort care orders from St. Joseph Health System's Perinatal Comfort Care Program, Orange, California. (posted here with permission; see disclaimer)
Balaguer A, Martín-Ancel A, Ortigoza-Escobar D, Escribano J, Argemi J. The model of palliative care in the perinatal setting: A review of the literature. BMC Pediatrics 2012, 12:25.
Bennett J, Dutcher J, Snyders M. Embrace: addressing anticipatory grief and bereavement in the perinatal population: a palliative care case study. J Perinat Neonatal Nurs. 2011 Jan-Mar;25(1):72-6.
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.
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.
Calhoun BC. Perinatal hospice: Compassionate and comprehensive care for families with lethal prenatal diagnosis. The Linacre Quarterly 77(2) (May 2010): 147–156.
Carey JC. Perspectives on the care and management of infants with trisomy 18
and trisomy 13: striving for balance. Curr Opin Pediatr. 2012 Oct 5. [Epub ahead
of print] PubMed PMID: 23044555.
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. Perinatal Hospice Care during the Antepartum Period. Journal of Obstetric, Gynecologic, & Neonatal Nursing. 2013 doi: 10.1111/1552-6909.12029
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.
(Anita Catlin DNSc FNP FAAN, a professor of nursing at Sonoma State University in California, 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.
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.
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. Practice recommendations for obstetric sonographers when parents are considering or pursuing perinatal hospice and palliative care, www.nicuparenting.org, 2013.
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
Fenton LJ. Trisomy 13 and 18 and quality of life: Treading "softly". Am J Med Genet Part A, 2011.
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.
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.
Kilby M, Pretlove S, Bedford Russel A. Multidisciplinary palliative care in unborn and newborn babies. BMJ 2011;342:d1808.
Kuebelbeck A. A Gift of Time: Continuing a pregnancy when a baby's life is expected to be brief. CHiPPS Pediatric Palliative Care Newsletter (Children's Project on Palliative/Hospice Services, a project of the National Hospice and Palliative Care Organization). February 2013
Kuebelbeck A. Waiting with Gabriel. Current Problems in Pediatric and Adolescent Health. 2011 April;41(4):113-4.
Kuebelbeck A. A Gift of Time: Continuing a pregnancy when a baby's life is expected to be brief. National Association of Perinatal Social Workers NAPSW Forum, Spring 2013, Vol. 33, No. 2.
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).
Lathrop A, VandeVusse L. Affirming Motherhood: Validation and invalidation in women's perinatal hospice narratives. Birth, 2011 September;38(3):256-265.
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.
Milstein JM. 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.
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.
Parravicini E. Is 'comfort' care a 'medical' care? Observations on a neonatal population. Journal of Medicine and the Person. Published first online Jan. 18, 2012.
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.
Perinatal Palliative Care Framework MCN (South East Scotland), togetherforshortlives.org.uk
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 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.
Thiele P. He was my son, not a dying baby. J Med Ethics 2010 36:646-647.
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.
Tyler M. “Perinatal Palliative Care: A Collaborative Approach,” Greater Cleveland M.D. News, July/August 2008, p. 11.
"You 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.
Williams M. Neonatal Hospice Nursing, Part One: Outpatient and Part Two: Inpatient.
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]
Wool C., Dudek M. Exploring the Perceptions and the Role of Genetic Counselors in the Emerging Field of Perinatal Palliative Care. J Genet Couns. 2013 Apr 18. [Epub ahead of print]
Wool C. Clinician confidence and comfort in providing perinatal palliative care. Journal of Obstetric, Gynecologic and Neonatal Nursing 2013 Jan;42(1):48-58.
Wool C. Systematic Review of the Literature: Parental Outcomes After Diagnosis of Lethal Fetal Anomaly. Advances in Neonatal Care 2011 June;11(3):182-192.
Wool C, Northam S. The Perinatal Palliative Care Perceptions and Barriers Scale Instrument©: Development and validation. Advances in Neonatal Care 2011 Dec;11(6):397-403.
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.