Handbook of Perinatal and Neonatal Palliative Care
Rana Limbo, Charlotte Wool,
Brian S. Carter, eds. (Springer, 2019)
American Journal of Nursing
Book of the Year in two categories
Neonatal Palliative Care for Nurses
Alexandra Mancini, Jayne Price, Tara Kerr-Elliott, eds. (Springer, 2020)
ACOG Committee Opinion on Perinatal Palliative Care;
also endorsed by the Society for Maternal-Fetal Medicine and the American Academy of Pediatrics
From the conclusions: "Health care providers and institutions are encouraged to develop perinatal palliative care programs."
Perinatal Palliative Care: A Clinical Guide. Denney-Koelsch E, Côté-Arsenault D, eds.S.l.: Springer Nature; 2020.
FEATURED RESOURCES
Perinatal Palliative Care Tool Kit for developing a program and Position Paper on Perinatal Palliative Care, from RTS Bereavement Services/Gundersen Health System.
Limbo RK, Wool C, Carter BS. Handbook of Perinatal and Neonatal Palliative Care: A Guide for Nurses, Physicians, and Other Health Professionals. New York: Springer Publishing Company, LLC; 2020. Review: "A book whose time has come." Winner of American Journal of Nursing Book of the Year in two categories
American College of Obstetricians and Gynecologists Committee Opinion: Perinatal Palliative Care. Obstetrics & Gynecology. 2019;134(3).
Resources for patient care from the Neonatal Comfort Care Program at Columbia University Children's Health and New York-Presbyterian Morgan Stanley Children's Hospital, including downloadable Guidelines for Comfort, Admission Order Set, Birth Plan-Medical, Birth Plan-Team, Pathway-Perinatal, Tasks-Perinatal, Pathway-NICU and Tasks-NICU.
International Children's Palliative Care Network free online training course in perinatal palliative care (endorsed by the University of South Wales) available in English and in French, in collaboration with La Société Française de Soins Palliatifs Pédiatriques, 2024.
Care Around Stillbirth and Neonatal Death Clinical Practice Guideline: Perinatal Palliative Care from the Stillbirth Centre of Research Excellence, based at Mater Research and the University of Queensland, in partnership with Perinatal Society of Australia and New Zealand (PSANZ), 2024.
Ziegler TR, Kuebelbeck A. Close to Home: Perinatal Palliative Care in a Community Hospital. 2020;20(3):196-203.
Issue topic: Perinatal and Neonatal Palliative and Hospice Care, Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, in collaboration with the National Hospice and Palliative Care Organization. Issue 70, February 2023.
Issue topic: Perinatal and Neonatal Hospice/Palliative Care, Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, in collaboration with the National Hospice and Palliative Care Organization. Issue 49, November 2017.
Kuebelbeck A. Perinatal Palliative Care: Past, Present and Future. National Hospice and Palliative Care Organization Pediatric E-Journal, Issue 70. February 2023, 20-23.
Kuebelbeck A. Perinatal palliative care: Two decades of exponential growth. In Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, in collaboration with the National Hospice and Palliative Care Organization, Issue 49. November 2017.
A Perinatal Pathway for Babies with Palliative Care Needs from Together for Short Lives in the U.K., developed in conjunction with ethicists and clinicians working across obstetrics, antenatal and neonatal care, and children’s palliative care. Full pathway available for free download.
American Academy of Nursing policy brief, Perinatal palliative care as an essential element of childbearing choices. Limbo R, Brandon D, Côté-Arsenault D, Kavanaugh K, Kuebelbeck A, Wool C. Nursing Outlook, January/February 2017(65)1:123–125.
Association of Women’s Health, Obstetric and Neonatal Nurses position statement on the importance of perinatal palliative care, Nov. 1, 2023
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
Patch South Africa Perinatal Palliative Care: A guide to supporting families when a baby is at high risk of dying before or shortly after birth and webinar
Perinatal Palliative Care and End-of-Life Web-Based Toolkit from the Texas Pediatric Society Committee on Fetus and Newborn
HSE (Ireland's national health service) National Standards for Bereavement Care following Pregnancy Loss and Perinatal Death, including perinatal palliative care, August 2016
Palliativ- und Trauerbegleitung in der Neonatologie (PaluTiN), "Palliative Care and Grief Counseling in Perinatology and Neonatology: Recommendations for professional caregivers in the field of prenatal diagnostics, pregnancy crisis counseling, obstetrics, neonatology, pediatrics and aftercare," available in English and German
Collier R. Providing hospice in the womb. Canadian Medical Association Journal, Feb. 17, 2011.
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.)
North West Perinatal/Neonatal Palliative Care online resources (North West Neonatal Operational Delivery Network, U.K.)
Northern Ireland Antenatal Palliative Care Pathway and User Guide, January 2022
Kobler K, Limbo R, Oakdale C. Childbirth education for parents receiving perinatal palliative care. International Journal of Childbirth Education. April 2012;27(2):26-32.
Hoeldtke NJ, Calhoun BC. Perinatal hospice. Am J Obstet Gynecol. 2001 Sep;185(3):525-9.
International Children's Palliative Care Network fact sheet on hospice and palliative care for children, including perinatal palliative care. July 2013
Kuebelbeck A. "Incompatible with life," compatible with love: Perinatal hospice and palliative care. Pallimed, a Hospice & Palliative Medicine Blog. Oct. 17, 2016.
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.
Wool C. State of the Science on Perinatal Palliative Care. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 2013 May/June; 42(3):372–382.
FEATURED VIDEOS
CONFERENCES AND TRAINING
Resolve Through Sharing Bereavement Services clinically based professional training for caregivers, including perinatal death bereavement training (miscarriage, ectopic pregnancy, stillbirth, newborn death) and perinatal palliative care. Professional training workshops include: "Blueprint for a Perinatal Palliative Care Program®: Caring for families who continue the pregnancy after their baby is diagnosed with a life-limiting condition" and "Blueprint for a Perinatal Palliative Care Program®: The Basics." Gundersen Health System, La Crosse, Wisconsin
Next-Level Perinatal Palliative Care training, annual training co-sponsored by Columbia University's Department of Obstetrics and Gynecology and Department of Pediatrics and the Columbia Neonatal Comfort Care Program, New York City
Neonatal Palliative Care: An Enhanced Course, virtual training from the International Children's Palliative Care Network (new December 2023)
Pregnancy Loss and Infant Death Alliance (PLIDA): professional networking and biennial International Perinatal Bereavement Conference
Free e-learning course on perinatal palliative care from the International Children's Palliative Care Network (course endorsed by the University of South Wales)
Center to Advance Palliative Care (CAPC) Pediatric Palliative Care Field Guide, including perinatal palliative care. Free download
Presentations by Amy Kuebelbeck
See also the perinatal hospice & palliative care Facebook page and Twitter account for announcements of upcoming conferences.
Online education:
Hospice and Palliative Nurses Association Certification in Perinatal Loss Care
Hospice and Palliative Nurses Association ethics course When Hello Means Goodbye: An Exploration into Perinatal Palliative Care
International Children's Palliative Care Network free online training course in perinatal palliative care (endorsed by the University of South Wales) available in English and in French, in collaboration with La Société Française de Soins Palliatifs Pédiatriques, 2024.
National Hospice and Palliative Care Organization: Evidence-based Neonatal and Perinatal Palliative Care with Brian Carter MD. CE/CME credit available for counselors, nurses, physicians, and social workers.
Resolve Through Sharing Bereavement Services/Gundersen Health System 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?"
End-of-Life Nursing Education Consortium (ELNEC) perinatal and neonatal palliative care training module
Royal College of Midwives (UK) online training, "Perinatal palliative care: The midwives' role"
PROFESSIONAL NETWORKING
Private e-mail listserv for caregivers interested in perinatal hospice and palliative care. List began in 2006 and currently has about 400 members. Moderated by Amy Kuebelbeck. Request to join here.
Pregnancy Loss and Infant Death Alliance (PLIDA); professional networking and biennial International Conference on Perinatal and Infant Death
Perinatal Society of Australia and New Zealand (PSANZ) perinatal palliative care special interest group
MORE VIDEOS FOR CAREGIVERS
Video of Baby Amanda, diagnosed prenatally with Trisomy 18. Produced by the National Hospice and Palliative Care Moments of Life campaign.
Video about the perinatal palliative care program at Johns Hopkins Hospital.
Video for caregivers by Tammy Ruiz Ziegler RN CPLC, perinatal bereavement coordinator at Mary Washington Hospital, Fredericksburg, Virginia. Also available in 7 other languages.
Video for the Neonatal Comfort Care program at New York-Presbyterian Morgan Stanley Children's Hospital.
Panel discussion about the perinatal palliative care program at the Center for Fetal Diagnosis & Treatment at Children's Hospital of Philadelphia.
Video from Perinatal Hospice Care, Ireland. This full-length video is also available on YouTube as a series of 10 shorter videos.
Video by Perinatal Palliative Care, a network of hospitals and clinics in Australia, with more videos and information on their website.
Presentation by Elvira Parravicini MD, founder of the Neonatal Comfort Care program at New York-Presbyterian, given in Dublin in 2016.
BIRTH PLAN RESOURCES FOR CAREGIVERS
Perinatal palliative care birth plan in English and Spanish, in-house comfort care orders, and discharge comfort care orders from St. Joseph Health System's Perinatal Comfort Care Program, Orange, California. (Uploaded here with permission; see disclaimer.)
Texas Pediatric Society Committee on Fetus and Newborn perinatal palliative care birth plan, from their Perinatal Palliative Care and End-of-Life Web-Based Toolkit
University of North Carolina Center for Maternal and Fetal Health Perinatal Palliative Care Program birth plan (in English and Spanish)
Allston S, Chichester M, Sturtz WJ. Perinatal advance directives. Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, a project of the National Hospice and Palliative Care Organization, 2015 May (39):22-24.
May C. Perinatal advance care planning. Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, a project of the National Hospice and Palliative Care Organization, 2015 Feb. (38):9-10.
For more about birth plans and advance care plans, see the Birth Planning page on this site.
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; second edition forthcoming 2023), 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 & Death: Knowing Your Baby Will Not Survive" brochure from RTS Bereavement Services/Gundersen Health System, available in English and Spanish
Perinatal Palliative Care: Information for Parents and Carers, brochure from Oxford University Hospitals NHS Foundation Trust, 2022
REFERENCES RELEVANT TO PERINATAL HOSPICE AND PALLIATIVE CARE
Abayneh M, Rent S, Ubuane PO, Carter BS, Deribessa SJ, Kassa BB, Tekleab AM, Kukora SK. Perinatal palliative care in sub-Saharan Africa: recommendations for practice, future research, and guideline development. Front. Pediatr., 26 June 2023
Ambler J. A closer look at perinatal palliative care, eHospice, March 11, 2014.
American Academy of Pediatrics Committee on Bioethics and Committee on Hospital Care statement, Palliative Care for Children. Pediatrics 2000 Aug;106(2:)351-357. Reaffirmed 2006 and 2012.
American College of Obstetricians and Gynecologists Committee Opinion: Perinatal Palliative Care. Obstetrics & Gynecology. 2019;134(3).
American College of Obstetricians and Gynecologists and the Society of Maternal-Fetal Medicine Practice Bulletin No. 162: Prenatal Diagnostic Testing for Genetic Disorders, including a recommendation that post-diagnosis counseling "should include ... perinatal palliative care." May 2016
Martín-Ancel A, Pérez-Muñuzuri A, González-Pacheco N, Boix H, Fernández MGE, Sánchez-Redondo MD, Cernada M, Couce ML. Perinatal palliative care, Anales de Pediatría (English edition), volume 96, Issue 1, 2022, 60.e1-60.e7.
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.
Barrington K. Guidelines to use when speaking with parents who have received a potentially life-limiting diagnosis for their fetus or child. Adapted and reprinted in Berg SF, Paulsen OG, Carter BS. Why were they in such a hurry to see her die? American Journal of Hospice & Palliative Care, June 2013; 30(4):406-408.
Bender TM. Pope Francis and Perinatal Palliative Care: Advancing the Culture of Mercy. Perspectives in Biology and Medicine. 2020;63(3):512-525.
Benini F, Congedi S, Rusalen F, Cavicchiolo ME and Lago P. Barriers to Perinatal Palliative Care Consultation. Front. Pediatr. September 2020; 8:590616.
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.
Berg SF, Paulsen OG, Carter BS. Why were they in such a hurry to see her die? American Journal of Hospice & Palliative Care, June 2013; 30(4):406-408.
Bernardes LS, Oliveira FF, Jesus RCDA, et al. Family Conferences in Prenatal Palliative Care. Journal of Palliative Medicine. June 2020. doi:10.1089/jpm.2019.0579.
Bertaud S, Brightley G, Crowley N, Craig F, Wilkinson D. Specialist perinatal palliative care: a retrospective review of antenatal referrals to a children's palliative care service over 14 years. BMC Palliat Care. Nov 2023;22(1):177.
Bétrémieux P. TOP or palliative care for lethal foetal condition? Prenatal Diagnosis, 2010; (30): 1112.
Bétrémieux P, Druyer J, Bertorello I, Huillery ML, Brunet C, Le Bouar G. Antenatal palliative plan following diagnosis of fetal lethal condition: Rennes Teaching Hospital experience. J Gynecol Obstet Biol Reprod (Paris). 2015 Sept. 29.
Bétrémieux P. Palliative care in perinatal medicine: Meeting the newborn child, valuing the child’s lifetime, emergency bonding. European Association for Palliative Care blog, April 11, 2016. Also available in French
Black BP, Howard E, Bakewell-Sachs S. The evolving science of care in perinatal loss. Journal of Perinatal & Neonatal Nursing, January/March 2011, Vol. 25, Issue 1.
Bollenbach LM. When end of life is near life's start. Vision, publication of the National Association of Catholic Chaplains, January/February 2014.
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.
Botero N, de Mezerac I, Ducard D, Caeymaex L. What Motivates Parents to Continue a Pregnancy after a Life-Limiting Fetal Diagnosis: A Qualitative Study of Parents. Advances in Pediatrics and Neonatal Care. 2020;2(2). doi:10.29011/apnc-114.100014.
Bourdens M, Tandonnet J, Renesme L, Tosello B. Diagnosis and outcomes of continued pregnancies despite a diagnosis of severe fetal pathology: A French multicenter retrospective study. European Journal of Paediatric Neurology. 2017;21.
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 ACG, 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;92(1): 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.
Buckingham L, Janssen M, Ray EM, et al. Top Ten Tips Palliative Care Clinicians Should Know About Caring for Serious Illness in Pregnancy. Journal of Palliative Medicine. October 2020. doi:10.1089/jpm.2019.0651.
Buller L. Perinatal palliative care: Beginning the journey. Poster presentation at Center to Advance Palliative Care national seminar, Nov. 7-9, 2013.
Buskmiller, C., & Calhoun, B.C. (2021). A Scoping Review of Perinatal Palliative Care: Allowing Parents to Be Parents. American journal of perinatology, 10.1055/s-0041-1740251.
Buskmiller C, Ho S, Chen M, Gants S, Crowe E, Lopez S. Patient-centered perinatal palliative care: family birth plans, outcomes, and resource utilization in a diverse cohort. Am J Obstet Gynecol MFM. 2022;100725. doi:10.1016/j.ajogmf.2022.100725
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, Napolitano P, Terry M, Bussy C, Hoeldke NJ. Perinatal Hospice: Comprehensive Care for the Family of the Fetus With a Lethal Condition. Obstetrical & Gynecological Survey. 2003;58(11):718-719.
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.
Carlsson T, Bergman G, Karlsson A, Wadensten B, Mattsson E. Experiences of termination of pregnancy for a fetal anomaly: A qualitative study of virtual community messages. Midwifery Journal, Aug. 1, 2016.
Carroll K. The Miracle of Time. Supportive Voice. Winter 2004; Vol. 10, No. 1.
Carter BS. Advance care planning: outpatient antenatal palliative care consultation. Arch Dis Child Fetal Neonatal Ed. 2016 Sep 29.
Carter BS. An ethical rationale for perinatal palliative care. Semin Perinatol. 2021;151526.
Carter BS. 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. More than medication: perinatal palliative care. Acta Paediatrica, Volume 105, Issue 11, pages 1255–1256, November 2016.
Carter BS. Neonatal and Infant Death: What Bereaved Parents Can Teach Us. Journal of Perinatology. 2007; 27:467-468.
Carter BS. Pediatric palliative care in infants and neonates. Children 2018, 5(2), 21; doi:10.3390/children5020021.
Carter BS. The Natal Journey and Perinatal Palliative Care. Perspectives in Biology and Medicine. 2020;63(3):549-552.
Carter BS, Levetown M. Eds. Palliative Care for Infants, Children, and Adolescents: A Practical Handbook. Baltimore, MD. Johns Hopkins University Press, 2004.
Catania TR, Bernardes LS, Benute GRG, Gibeli MABC, Nascimento NBD, Barbosa TVA, Krebs VLJ, Francisco RP. When One Knows a Fetus Is Expected to Die: Palliative Care in the Context of Prenatal Diagnosis of Fetal Malformations. Journal of Palliative Medicine. 2017;20(9):1020-1031.
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.
Chamberlain C, Spicer S, Curiel KD. A primary care provider enhances family support in perinatal palliative care. Paediatr Child Health, 2015 April; 20(3):150-151.
Chichester M, Wool C. The meaning of food and multicultural implications for perinatal palliative care. Nursing for Women’s Health. 2015 June;19(3):224-235.
Child Bereavement U.K. Best Practice Guidance: Taking photographs following the death of a baby, 2011.
Children's Project on Palliative/Hospice Services (CHiPPS) Pediatric Palliative Care Newsletter, a project in collaboration with the National Hospice and Palliative Care Organization. Issue topic: Perinatal & Neonatal Hospice/Palliative Care. Issue 49, November 2017.
Children's Project on Palliative/Hospice Services (CHiPPS) Pediatric Palliative Care Newsletter, a project in collaboration with the National Hospice and Palliative Care Organization. Issue topic: Perinatal Palliative and Hospice Care. Issue 30, February 2013.
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.
Cobb AD. A Virtue-Based Defense of Perinatal Hospice. London: Routledge; 2019.
Cobb A. Acknowledged dependence and the virtues of perinatal hospice. Journal of Medicine & Philosophy, Oxford University Press, published online Dec. 8, 2015.
Coffing J. Let the little children come to me: A perinatal palliative care experience. Chaplaincy Today 2011 Vol. 27, No. 1, pp. 2-9. Published online Jan. 2, 2014.
Cole JCM, Jones T, Shaughnessy E, Chadwick S, Munson D and Moldenhauer J. Multidisciplinary perinatal palliative care plan for a pregnant woman carrying a fetus with Trisomy 13 and her family. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 2015 June (44): S79.
Cole JCM, Macdonald JN, Qamar H. Leading up to Loss: Understanding the Perinatal Grief Experience for Expectant Fathers when a Life-Limiting Fetal Diagnosis is Confirmed. Archives of Palliative Care and Medicine. 2019;3(1).
Cole JCM, Moldenhauer JS, Jones TR, Shaughnessy E, Zarrin H, Coursey AL, Munson DA. A Proposed Model for Perinatal Palliative Care. Journal of Obstetric, Gynecologic & Neonatal Nursing, June 2017.
Collura C. Fetal Positions: Empowering the role of palliative care in maternal-fetal treatment centers. Journal of Pain and Symptom Management, February 2018;55(2):559.
Connelly CF. Finding a way when there seemed to be no way: The journey to palliative care for our son, Silas. Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, in collaboration with the National Hospice and Palliative Care Organization, Issue 49. November 2017.
Cope H, Garrett ME, Gregory S, and Ashley-Koch A. Pregnancy continuation and organizational religious activity following prenatal diagnosis of a lethal fetal defect are associated with improved psychological outcome. Prenatal Diagnosis, 2015 August 35: 761–768.
Corr C, Torkildson C eds. Perinatal Loss. Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, a project of the National Hospice and Palliative Care Organization. 2007 Feb;(6):1-22.
Cortezzo DE, Bowers K, Meyer MC. Birth Planning in Uncertain or Life-Limiting Fetal Diagnoses: Perspectives of Physicians and Parents. Journal of Palliative Medicine. 2019. doi:10.1089/jpm.2018.0596.
Cortezzo DE, Ellis K and Schlegel A. Perinatal Palliative Care Birth Planning as Advance Care Planning. Frontiers in Pediatrics 2020; 8:556.
Cortezzo DE, Sanders MR, Brownell EA, Moss K. End-of-Life Care in the Neonatal Intensive Care Unit: Experiences of Staff and Parents. Amer J Perinatol 2015; 32(08): 713-724.
Cortezzo DE, Vawter-Lee M, Shoaib A, Venkatesan C. Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope. Front Pediatr. 2023;11:1205543. Published 2023 Jun 2.
Côté-Arsenault D. The case for perinatal palliative care and expanded research. Palliative Medicine. 2023;37(9):1286-1288.
Côte-Arsenault D, Denney-Koelsch E. “Love Is a Choice”: Couple Responses to Continuing Pregnancy With a Lethal Fetal Diagnosis. Illness, Crisis & Loss. First published November 15, 2017.
Côté-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.
Côté-Arsenault D, Denney-Koelsch E. "Have no regrets": Parents' experiences and developmental tasks in pregnancy with a lethal fetal diagnosis. Soc Sci Med. 2016 Feb 26;154:100-109.
Côté-Arsenault D, Denney-Koelsch E, Elliott G. 'Creating a safe space': how perinatal palliative care coordinators navigate care and support for families. Int J Palliat Nurs. 2021;27(8):386-400.
Côté-Arsenault D, Denney-Koelsch EM, Mccoy TP, Kavanaugh K. African American and Latino bereaved parent health outcomes after receiving perinatal palliative care: A comparative mixed methods case study. Applied Nursing Research. Online ahead of print 25 October 2019.
Côté-Arsenault D, Krowchuk H, Jenkins Hall W, et al. “We want what’s best for our baby”: prenatal parenting of babies with lethal conditions. J Prenat Perinat Psychol Health 2015; 29(3): 157–176.
Czynski AJ, Souza M, Lechner BE. The Mother Baby Comfort Care Pathway. Advances in Neonatal Care. 2021; Publish ahead of print.
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. 2006;11(2):52-55. (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.
Dangel T. Standards of perinatal palliative care. Warsaw Hospice for Children Foundation: 2019.
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. Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, a project of the National Hospice and Palliative Care Organization, May 2007; Issue 7, p. 22.
Dean B, McDonald K. Building an interprofessional perinatal palliative care team. NeoReviews, 2014 Oct 1;15(10):e422 -e425.
Denney-Koelsch E, Black BP, Côté-Arsenault D, Wool C, Kim S, Kavanaugh K. A Survey of Perinatal Palliative Care Programs in the United States: Structure, Processes, and Outcomes. J Palliat Med. 2016 Aug 25. [Epub ahead of print]
Denney-Koelsch E, Côté-Arsenault D, eds. Perinatal Palliative Care: A Clinical Guide. S.l.: Springer Nature; 2020.
Denney-Koelsch E, Côté-Arsenault D. “My Baby Is A Person”: Parents’ experiences with life-threatening fetal diagnosis. Journal of Pain and Symptom Management, 2012 Feb;43(2):340–341.
Denney-Koelsch E, Côté-Arsenault D. “I Walk with Her Every Day”: Parents’ experiences of pregnancy with a lethal fetal diagnosis. Journal of Pain and Symptom Management, 2015 Feb;49(2):338.
Denney-Koelsch E, Côté-Arsenault D, Lemcke-Berno E. Parents' experiences with ultrasound during pregnancy with a lethal fetal diagnosis. Global Qualitative Nursing Research, 2015 Jan-Dec;2.
Depoers-Béal C, Baccon FL, Bouar GL, Proisy M, Arnaud A, Legendre G, Dayan J, Bétrémieux P, Lous ML. Perinatal grief following neonatal comfort care for lethal fetal condition. Journal of Neonatal-Perinatal Medicine. July 2019:1-8. doi:10.3233/npm-180180.
Devereaux M, Kon AA. May We Take Our Baby With Hypoplastic Left Heart Syndrome Home?, The American Journal of Bioethics, (2017) 17:7, 72-74.
Doherty ME, Power L, Williams R, Stoppels N, Dumond LG. Experiences from the first 10 years of a perinatal palliative care program: A retrospective chart review. Paediatrics & Child Health. 2019.
Dombrecht L, Chambaere K, Beernaert K, Roets E, De Vilder De Keyser M, De Smet G, Roelens K, Cools F. Components of Perinatal Palliative Care: An Integrative Review. Children. 2023; 10(3):482.
Doyle KM, Christ A, Klein-Patel M, York Charlotte. Perceptions and Barriers of Healthcare Workers in Perinatal and Palliative Care at Western Pennsylvania Hospital. Obstetrics & Gynecology, May 2016.
Ellis, KL, Tucker, M. A Unique Model for Perinatal Palliative Care in a Level IV Neonatal Intensive Care Unit, Children's Mercy Kansas City Research Days, May 15, 2019.
Engelder S, et al. A Model Program for Perinatal Palliative Services. Advances in Neonatal Care, February 2012; 12(1):28-36.
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
Evans N. Updated perinatal palliative standards emphasise choice and bereavement support. Nursing Children and Young People. 12 June 2017;29(5):8-9.
Falke M, Rubarth LB. Implementation of a Perinatal Hospice Program. Adv Neonatal Care. 2020;20(3):223-228.
Farmer ZJ, Palmaccio-Lawton SJ, Flint HA, Whitford B, Thienprayoon R, Nee K. Fetal outcomes and continuity in perinatal palliative care patients at a quaternary care pediatric hospital [published online ahead of print, 2023 Apr 1]. J Perinatol. 2023;10.1038/s41372-023-01664-x. doi:10.1038/s41372-023-01664-x
Fenton LJ. Trisomy 13 and 18 and quality of life: Treading "softly." Am J Med Genet Part A, 2011.
Fernandes IB, São Bento PADS, Xavier RB. Experiences of women in gestating and giving birth to anencephalic fetuses: the multiple faces of obstetric violence. Interface - Comunicação, Saúde, Educação. 2019;23.
Ferrell BR. The unborn baby with no chance at life: Perinatal palliative care. Medscape, Aug. 30, 2016.
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, 2003.
Flaig F, Lotz JD, Knochel K, Borasio GD, Führer M, Hein K. Perinatal Palliative Care: A qualitative study evaluating the perspectives of pregnancy counselors. Palliative Medicine. 2019:026921631983422. doi:10.1177/0269216319834225.
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. Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, a project of the National Hospice and Palliative Care Organization, May 2007; Issue 7, p. 16.
Garten L, Glöckner S, Siedentopf JP, Bührer C. Primary palliative care in the delivery room: patients' and medical personnel's perspectives. J Perinatol. 2015 Dec;35(12):1000-5.
Garten L, von der Hude K. Palliative Care in the Delivery Room: Challenges and Recommendations. Children. 2023; 10(1):15.
Goulette C. "Guardians of Angels." Advance Healthcare Network for Nurses, June 2008.
Guimarães D, Areias M, Ramalho C, Rodrigues M. Perinatal palliative care following prenatal diagnosis of severe fetal anomaly: a new family-centered approach in a level III Portuguese hospital. Journal of Pediatric and Neonatal Individualized Medicine 2019;8(1):e080102, doi: 10.7363/080102.
Guon J, Wilfond BS, Farlow B, Brazg T, Janvier A. Our children are not a diagnosis: The experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18 . Am J Med Genet A, 2013 Dec 5.
Hardart GE. The Pope and the Possibilities of the Path Less Traveled. Perspectives in Biology and Medicine. 2020;63(3):544-548.
Hasegawa SL, Fry JT. Moving toward a shared process: The impact of parent experiences on perinatal palliative care. Seminars in Perinatology, DOI: http://dx.doi.org/10.1053/j.semperi.2016.11.002
Hawthorne F. Winston Churchill Memorial Trust of Australia report on the provision of specialised antenatal care for women whose unborn baby is most likely to die shortly before, during or soon after birth, 2007.
Haxel C, Glickstein J, Parravicini E. Neonatal Palliative Care for Complicated Cardiac Anomalies: A 10-Year Experience of an Interdisciplinary Program at a Large Tertiary Cardiac Center. The Journal of Pediatrics. 2019;214:79-88.
Hochberg T. Touching Souls: Healing with bereavement photography. The Forum, newsletter of the Association for Death Education and Counseling. Apr/May/Jun 2003;29(2):6.
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.
Hospice Letter, "Perinatal hospice programs provide support for families facing a newborn's death," June 2008, pp. 4-5.
Hostalery L, Tosello B. Outcomes in continuing pregnancies diagnosed with a severe fetal abnormality and implication of antenatal neonatology consultation: A 10-year retrospective study. Fetal Pediatr Pathol. 2017 Mar 23:1-10.
Houlihan OA, O'Donoghue K. The natural history of pregnancies with a diagnosis of trisomy 18 or trisomy 13; a retrospective case series. BMC Pregnancy Childbirth. 2013 Nov 18;13:209.
Hospice and Palliative Nurses Association online chat featuring Rana Limbo PhD RN PMHCNS-BC CPLC FAAN of Bereavement Services/Resolve Through Sharing and the Pregnancy Loss and Infant Death Alliance (PLIDA) answering questions about perinatal bereavement and perinatal palliative care.
HSE (Ireland's national health service) National Standards for Bereavement Care Following Pregnancy Loss and Perinatal Death, including guidelines for perinatal palliative care. August 2016
Howes V, Muscat H. Lethal fetal anomalies: A case of bilateral renal agenesis. MIDIRS Midwifery Digest, vol. 25, no. 3, September 2015, pp. 367-372.
Hull D, Davies G, Armour CM. Survey of the definition of fetal viability and the availability, indications, and decision making processes for post-viability termination of pregnancy for fetal abnormalities and health conditions in Canada. J Genet Couns. 2015 Nov 5.
Iles S, Gath D. Psychiatric outcomes of termination of pregnancy for foetal abnormality. Psychological Medicine 1993 May;23(2):407-13.
International Children's Palliative Care Network fact sheet on hospice and palliative care for children, including perinatal palliative care. July 2013
Jaquier, M. "The Value of a Life." Narrative Inquiry in Bioethics 12, no. 3 (2022): 202-203.
Jalowska A et al. [Perinatal palliative care performed in obstetrics and neonatology wards and hospices for children - own experience.] Article in Polish. Dev Period Med. 2019;23(4):253-262.
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.
Janvier A, Farlow B, Wilfond BS. The experience of families with children with trisomy 13 and 18 in social networks. Pediatrics 2012; 130:293-298.
Jaquier M, Klein A, Boltshauser E. Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly. BJOG 2006;113:951–953.
Kachlová M, Bužgová R. The attitudes of neonatological nurses to providing perinatal palliative care. Kontakt: Journal of nursing and social sciences related to health and illness. August 2021.
Kain VJ. Perinatal Palliative Care: Cultural, Spiritual, and Religious Considerations for Parents—What Clinicians Need to Know. Frontiers in Pediatrics. 2021;9.
Kamrath HJ, Osterholm E, Stover-Haney R, George T, Oconnor-Von S, Needle J. Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care. Journal of Palliative Medicine. December 2018. doi:10.1089/jpm.2018.0303.
Kavanaugh K, Roscigno C, Swanson K, Savage T, Kimura R, Kilpatrick S. Perinatal palliative care: Parent perceptions of caring in interactions surrounding counseling for risk of delivering an extremely premature infant. Palliative and Supportive Care, 2015 (13):145-155.
Kenner C, Press J, Ryan D. Recommendations for palliative and bereavement care in the NICU: a family-centered integrative approach. J Perinatol. 2015 Dec;35 Suppl 1:S19-23.
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.
Kidszun A, Linebarger J, Walter JK, Paul NW, Fruth A, Mildenberger E, Lantos JD. What If the Prenatal Diagnosis of a Lethal Anomaly Turns Out to Be Wrong? Pediatrics May 2016;137(5).
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, Oakdale C. Childbirth education for parents receiving perinatal palliative care. International Journal of Childbirth Education. April 2012;27(2):26-32.
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.
Kon AA. Discussing nonsurgical care with parents of newborns with hypoplastic left heart syndrome. Newborn & Infant Nursing Reviews. June 2005;5(2):60-68.
Kon AA. Healthcare providers must offer palliative treatment to parents of neonates with hypoplastic left heart syndrome. Arch Pediatr Adolesc Med. 2008 Sep;162(9):844-8.
Kon AA, Prsa M, Rohlicek CV. Choices doctors would make if their infant had hypoplastic left heart syndrome: comparison of survey data from 1999 and 2007. Pediatr Cardiol. 2013 Feb;34(2):348-53.
Kramer R, Sehring S, Ratto T, Hopkins LM. Addressing perinatal palliative care program development. Journal of Pain and Symptom Management, 2010 Feb;39(2):371–372.
Kuchemba-Hunter J. Compassion and Community in Perinatal Palliative Care: Understanding the Necessity of the Patient Perspective Through Narrative Illustration. Journal of Palliative Care. 2019;34(3):160-163.
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. A Gift of Time: Continuing a pregnancy when a baby's life is expected to be brief. Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, a project of the National Hospice and Palliative Care Organization. February 2013.
Kuebelbeck A. Building and sustaining relationships during pregnancy. In: Limbo R, Wool C, Carter B, eds. Handbook of Perinatal and Neonatal Palliative Care. Springer; 2019.
Kuebelbeck A. "Incompatible with life," compatible with love: Perinatal hospice and palliative care. Pallimed, a Hospice & Palliative Medicine Blog. Oct. 17, 2016.
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):6-7.
Kuebelbeck A. Perinatal palliative care: Two decades of exponential growth. Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, in collaboration with the National Hospice and Palliative Care Organization, Issue 49. November 2017.
Kuebelbeck A. Perinatal Palliative Care: Past, Present and Future. National Hospice and Palliative Care Organization Pediatric E-Journal, Issue 70. February 2023, 20-23.
Kuebelbeck A. Testimonianza, "Yes to Life! Prendersi cura del prezioso dono della vita nella fragilità," e-book compilation of presentations at conference in Rome, May 23-25, 2019. Libreria Editrice Vaticana, May 2020, pp. 175-176.
Kuebelbeck A. Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life. Loyola Press, 2003.
Kuebelbeck A. Waiting with Gabriel. Current Problems in Pediatric and Adolescent Health. 2011 April;41(4):113-4.
Kuebelbeck A. “Yes to Life” and the Expansion of Perinatal Hospice. Perspectives in Biology and Medicine. 2020;63(3):526-531.
Kuebelbeck A, Carter B. Exploring the concept of palliative care for babies and their families. In: Mancini A, Price J, Kerr-Elliott T, eds. Neonatal Palliative Care for Nurses. Springer; 2020:9-20.
Kuebelbeck A., Davis DL. A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief. Johns Hopkins University Press, 2011.
Kuebelbeck A, Denney-Koelsch E. Parental experiences and needs after a life-limiting prenatal diagnosis. In: Denney-Koelsch E, Côté-Arsenault D, eds. Perinatal Palliative Care: A Clinical Guide. Springer; 2020:57-76.
Kukora S, Gollehon N, Laventhall N. Antenatal palliative care consultation: implications for decision-making and perinatal outcomes in a single-centre experience. Arch Dis Child Fetal Neonatal Ed, published online first 16 September 2016.
Lantos JD. Highlights from the Vatican-sponsored Conference on Perinatal Palliative Care, blog post, Children’s Mercy,Kansas City.
Lantos JD. Yes to Life: An Opportunity for Partnership Between Medicine and Religion. Perspectives in Biology and Medicine. 2020;63(3):509-511.
Lantos JD (ed). Special Section: The Pope's Speech. Perspectives in Biology and Medicine. 2020;63(3):502-552.
Lathrop A, VandeVusse L. Affirming Motherhood: Validation and invalidation in women's perinatal hospice narratives. Birth, 2011 September;38(3):256-265.
Lathrop A, VandeVusse L. Continuity and change in mothers’ narratives of perinatal hospice. Journal of Perinatal & Neonatal Nursing, January/March 2011, Vol. 25, Issue 1.
Lavang E, Ziegler TR, Limbo R. A Brief Overview of Perinatal Palliative Care Research and Practice. ChiPPS E-Journal, a project of the Children's Project on Palliative/Hospice Services, in collaboration with the National Hospice and Palliative Care Organization, Issue 49. November 2017.
Lefkowitz C, Solomon C. Palliative care in obstetrics and gynecology. Obstetrics and Gynecology, Fec. 2016;(128)6:1403-1420.
Leimena ML, Rusch R. Palliative Care in the Perinatal and Neonatal Setting. In: Altilio T, Otis-Green S, Cagle JG, eds. The Oxford Textbook of Palliative Social Work. 2nd ed. Oxford University Press; 2022.
Leuthner SR, 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.
Leuthner SR, Acharya K. Perinatal counseling following a diagnosis of Trisomy 13 or 18. Advances in Neonatal Care. 2020:1-12.
Leuthner SR, Cortezzo DE. Editorial: Advances in neonatal-perinatal palliative care. Front Pediatr. Nov. 6 2023;11:1307584.
Libreria Editrice Vaticana, "Yes to Life! Prendersi cura del prezioso dono della vita nella fragilità," e-book compilation of presentations at conference in Rome, May 23-25, 2019. Accompanying video: https://youtu.be/J24jocCE9Ug.
Limbo R. Caring for families experiencing stillbirth: A unified position statement on contact with the baby. Commentary. Illness, Crisis & Loss 2012, 20(3):295-298.
Limbo R, Brandon D, Côté-Arsenault D, Kavanaugh K, Kuebelbeck A, Wool C. American Academy of Nursing policy brief, Perinatal palliative care as an essential element of childbearing choices. Nursing Outlook, January/February 2017(65)1:123–125.
Limbo R, Lathrop A. Caregiving in mothers' narratives of perinatal hospice. Illness, Crisis & Loss January 2014, Vol. 22(1):43-65.
Limbo R, Toce S, Peck T. Resolve Through Sharing position paper on perinatal palliative care, Gunderson Health System, August 2008.
Limbo R, Wool C. Perinatal palliative care [Editorial]. J Obstet Gynecol Neonatal Nurs. September–October 2016, 45(5):611–613.
Limbo RK, Wool C, Carter BS. Handbook of Perinatal and Neonatal Palliative Care: A Guide for Nurses, Physicians, and Other Health Professionals. New York: Springer Publishing Company, LLC; 2020.
Lin K. Palliative care at the end and the beginning of life. American Family Physician Community Blog, March 31, 2015.
Lin M, Rholl E, Andescavage N, et al. Improving Prenatal Palliative Care Consultation Using Diagnostic Trigger Criteria. J Pain Symptom Manage. 2024;67(2):e137-e145.
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.
Linebarger JS. Pregnancy Accompanied by Palliative Care. Perspectives in Biology and Medicine. 2020;63(3):535-538.
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.
LoGiudice JA, O'Shea E. Perinatal palliative care: Integration in a United States nurse midwifery education program. Midwifery, 2018 March;(58)117-121.
Lord S, Williams R, Pollard L, et al. Infant Maternal Perinatal Advanced Care Team: A Pilot Collaboration for Families Facing a Life-Threatening Fetal Diagnosis. J Palliat Med. 2023;26(1):101-105.
Lord S, Williams R, Pollard L, et al. Reimagining Perinatal Palliative Care: A Broader Role for Support in the Face of Uncertainty. Journal of Palliative Care. June 2022.
Loyet M, McLean A, Graham K, Antoine C, Fossick K. The Fetal Care Team: Care for Pregnant Women Carrying a Fetus with a Serious Diagnosis. MCN Am J Matern Child Nurs. 2016 Nov/Dec; 41(6):349-355.
Macauley RC. "Ethics of perinatal palliative care," chapter in Ethics in Palliative Care: A Complete Guide, Oxford University Press, 2018.
Macauley R, Elia G, Klein S, Lewandowski J. Perinatal palliative care. Journal of Pain and Symptom Management 2012, 43(2):369–370.
Madeuf A, Roman H, Verspyck E. Continuation of pregnancy despite a diagnosis of severe fetal anomaly: a retrospective French study. Acta Obstet Gynecol Scand. 2016 Apr 8.
Mancini-Smith A. Perinatal palliative care: Focus on needs through gentle guidance. Palliaped, January 2023.
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. Decisions Parents Make When Faced With Potentially Life-Limiting Fetal Diagnoses and the Importance of Perinatal Palliative Care. Frontiers in Pediatrics. 2020;8. doi:10.3389/fped.2020.574556.
Marc-Aurele KL, Hull AD, Jones MC, Pretorius DH. A fetal diagnostic center’s referral rate for perinatal palliative care. Annals of Palliative Medicine. 2018;7(2):177-185.
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.
Marc-Aurele K, Nelesen R et al. Perinatal palliative care: A retrospective study. Journal of Pain and Symptom Management, 2014 Feb; 47(2):391–392.
Mancini A et al. Practical guidance for the management of palliative care on neonatal units. Royal College of Paediatrics and Child Health/Chelsea and Westminster Hospital NHS Trust, February 2014.
Mancini A, Price J, Kerr-Elliott T, eds. Neonatal Palliative Care for Nurses. Springer; 2020.
Marron-Corwin MJ, Corwin D. When tenderness should replace technology: The role of perinatal hospice. NeoReviews, Vol. 9 No. 8 2008 e348.
Martel S, Ives-Baine L. "Most-prized possessions": Photography as living relationships within the end-of-life care of newborns. Illness, Crisis & Loss 2014, Vol. 22(4):311-332.
Marty CM, Carter BS. Ethics and palliative care in the perinatal world. Seminars in Fetal and Neonatal Medicine. 13 September 2017.
May C. Perinatal advance care planning. Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, a project of the National Hospice and Palliative Care Organization, 2015 Feb. (38):9-10.
McCarthy FT, Kenis A, Parravicini E. Perinatal palliative care: focus on comfort. Front Pediatr. Sept. 2023;11:1258285.
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.
McMahon DL, Twomey M, O'Reilly M, Devins M. Referrals to a perinatal specialist palliative care consult service in Ireland, 2012-2015. Arch Dis Child Fetal Neonatal Ed. 2017 Nov 9.
McNamara K, O'Donoghue K, O'Connell O, Greene RA. Antenatal and intrapartum care of pregnancy complicated by lethal fetal anomaly. The Obstetrician & Gynaecologist, June 2013, 15(3).
Meaney S, Corcoran P, and O'Donoghue K. Death of one twin during the perinatal period: An interpretative phenomenological analysis. Journal of Palliative Medicine, October 2016.
Meaney S, Nuzum D, O'Donoghue K. The Spiritual Impact of a Life-Limiting Diagnosis In-Utero. Journal of Pain and Symptom Management, December 2016;52(6):e134–e135.
Mendes J. Important research from the USA replicated in Portugal. eHospice, Aug. 19, 2013.
Mendes J, Wool J, Wool C. Ethical considerations in perinatal palliative care. J Obstet Gynecol Neonatal Nurs. 2017 Apr 6. pii: S0884-2175(17)30047-3. doi: 10.1016/j.jogn.2017.01.011. [Epub ahead of print]
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.
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 B, Sprague R, Harmon CM, Davis S. Walk with Me: A Bridge Program for Assisting Families Expecting Babies with Fetal Anomalies and/or a Terminal Diagnosis. Neonatal Network. 2020;39(1):24-28.
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
National Association of Neonatal Nurses Palliative and End-of-Life Care for Newborns and Infants Position Statement, February 2015.
National Coalition for Hospice and Palliative Care Clinical Practice Guidelines for Quality Palliative Care, 4th Edition, including perinatal palliative care. 2018
National Hospice and Palliative Care Organization Definition and Principles of Pediatric Palliative Care, Children's International Project on Palliative/Hospice Services, 2003.
National Perinatal Association Position Paper on Palliative Care, including perinatal hospice, December 2013
Nelson KE, Rosella LC, Mahant S, Guttmann A. Survival and Surgical Interventions for Children With Trisomy 13 and 18. JAMA. 2016;316(4):420-428.
NICE (National Institute for Health and Care Excellence, U.K.) Guideline NG61, End of life care for infants, children and young people with life-limiting conditions: planning and management. Practice recommendations include advance care planning during pregnancy; research recommendations include perinatal palliative care. December 2016
Nordin TA, Clark EC. A family's experience with perinatal palliative care. American Family Physician. 2015 Apr 1;91(7):442.
Northern Ireland Department of Health and Together for Short Lives. Providing high-quality palliative care for our children: A strategy for children's palliative and end-of-life care. Ten-year strategic plan includes recommendation for perinatal palliative care. November 2016
Nuzum D, Meaney S, O'Donoghue K. The impact of stillbirth on consultant obstetrician gynaecologists: a qualitative study. BJOG 2014; DOI: 10.1111/1471-0528.12695.
O'Connell O, Nuzum D, Meaney S, O'Donoghue K. Incompatible with Life but Not with Love: The value of prenatal palliative care in cases of lethal abnormalities diagnosed in the prenatal period. Journal of Palliative Care 2014 August 30(3):219-219.
Paize F. Multidisciplinary antenatal and perinatal palliative care. Infant 2019;15(1): 33-35.
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.
Parravicini E. Neonatal palliative care. Curr Opin Pediatr. 2017 Jan 13.
Parravicini E, Daho M, Foe G, Steinwurtzel R, Byrne M. Parental assessment of comfort in newborns affected by life-limiting conditions treated by a standardized neonatal comfort care program. Journal of Perinatology. 2018 Feb;38(2):142-147. doi: 10.1038/jp.2017.160.
Parravicini E, Lorenz JM. Neonatal outcomes of fetuses diagnosed with life-limiting conditions when individualized comfort measures are proposed. Journal of Perinatology, 2014 Jun;34(6):483-7.
Peacock V, Price J, Nurse S. From pregnancy to palliative care: advancing professional midwifery practice? Practical Midwife 2015 Nov.;18(10):18, 20-2, 24-5.
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.
Petkova, B. (2015) Podareno vreme: prodalzhavane na bremennostta pri “nesavmestimi s zhivota” diagnozi i perinatalen hospis [Gifted time: continuing pregnancy with ‘incompatible with life’ diagnoses and perinatal hospice]. In: Kaneva, V. and S. Stavru (eds), Etichni i pravni granitsi na savremennite meditsinski grizhi [Ethical and legal limits of contempo- rary medical care]. Sofia: St. Kliment Ohridski University Press, pp. 60-73.
Perinatal Palliative Care. Pediatrics. 2019;144(6).
Perinatal Palliative Care Framework MCN (South East Scotland), Together for Short Lives (U.K.)
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.
Ratislavová, K. Perinatální paliativní péče. 1. vyd. Praha : Grada Publishing, a.s., 2016, 200 s. ISBN: 978-80-271-0121-4.
Rent S, Lemmon ME, Ellestad S, Bidegain M. The Role of Perinatal Palliative Care in Fetal Neurology. Am J Perinatol. 2021;10.1055/a-1682-2798.
Riegel EL. A great divide. Palliative and Supportive Care, Cambridge University Press. 2015 June.
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.
Resolve Through Sharing. (2019). Cooling a baby’s body after perinatal death: A Resolve Through Sharing position statement. La Crosse, WI: Gundersen Lutheran Medical Foundation, Inc.
Rholl E, Leuthner S. The Role for Palliative Care at Centers Performing Maternal-Fetal Interventions. Front. Pediatr. Sec. Neonatology, Volume 11 (2023).
Roush A, Sullivan P, Cooper R, McBride J. Perinatal Hospice. Newborn and Infant Nursing Reviews. 2007 Dec;7(4):216-221.
Roscigno C, Savage T, Kavanaugh K, Moro T, Kilpatrick S, Strassner H, Grobman W, Kumura R. Divergent Views of Hope Influencing Communications Between Parents and Hospital Providers. Qualitative Health Research, 2012, 22(9):1232–1246.
Ruiz T. Practical considerations in preparing for a twin delivery with expected death of one twin: Isaac and Liam. International Journal of Childbirth Education. April 2012;27(2):80-82.
Rusalen F. Perinatal Palliative Care: A New Challenging Field. Journal of Palliative Medicine. 2020;23(5):600-600.
Rusalen, Francesca, et al. “Perinatal Palliative Care: a Dedicated Care Pathway.” BMJ Supportive & Palliative Care, 2019.
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.
Santiago-Warner, S. The Integration of the Resolved Through Sharing Perinatal Bereavement Follow-up Model with Latinx Cultural Values: A Case Illustration. Clin Soc Work J (2023).
Shoaib A, Vawter-Lee M, Venkatesan C, Soliman AF. Muslim perspectives on palliative care in perinatal and neonatal patients: a mini-review. Front. Pediatr., 13 June 2023.
Sidgwick P, Harrop E, Kelly B, Todorovic A, Wilkinson D. Fifteen-minute consultation: perinatal palliative care. Arch Dis Child Educ Pract Ed. Published online first Nov. 14, 2016.
Silveira AO, Wernet M, Franco LF, Dias PLM, Charepe Z. Parents' hope in perinatal and neonatal palliative care: a scoping review. BMC Palliat Care. Dec 18 2023;22(1):202.
Spatz DL. Breastfeeding in the context of palliative care. MCN, American Journal of Maternal Child Nursing. November/December 2016;41(6)374.
Stenekes SJ, Enx DCL, Harlos M, Chochinov HM, Mytopher K. A descriptive study evaluating perinatal healthcare providers' perspectives of palliative programming in 3 Canadian institutions. J Perinat Neonat Nurs 2014 Oct/Dec; 28(4):280–289
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 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: Ferrell BR, Coyle N, eds. Textbook
of Palliative Nursing. New York: Oxford University Press, 2001, pp. 556–569.
Sumner LH. Perinatal Hospice Services/Early Intervention Program purpose and procedures, 2006.
Sumner LH. Perinatal palliative care: Lighting the way for families through a difficult but sacred journey of beginnings and endings. Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, a project of the National Hospice and Palliative Care Organization, 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.
Tataj-Puzyna U, Szlendak B, Szabat M, Krzeszowiak J, Sys D. "This birth is difficult but beautiful: Parents' experience of giving birth to a baby with a lethal foetal diagnosis." Palliative Medicine in Practice, April 2023.
Tatterton MJ, Fisher MJ. 'You have a little human being kicking inside you and an unbearable pain of knowing there will be a void at the end': A meta-ethnography exploring the experience of parents whose baby is diagnosed antenatally with a life limiting or life-threatening condition. Palliat Med. 2023;37(9):1289-1302.
Tatterton MJ, Fisher MJ, Storton H, McShane ZP, Walker C. “Holding Families in Uncertainty”: A Framework Analysis of the Role and Impact of Children’s Hospices in the Provision of Perinatal Palliative Care. Illness, Crisis & Loss, 2023.
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.
Tewani KG, Jayagobi PA, Chandran S, et al. Perinatal Palliative Care Service: Developing a Comprehensive Care Package for Vulnerable Babies with Life Limiting Fetal Conditions. Journal of Palliative Care. October 2021.
Tewani K, Singh R, Wendy CPY, Jia Huan H, Jayagobi P, Teo I. Understanding the experiences of mothers receiving perinatal palliative care: A qualitative study. Palliat Med. 2023;37(9):1379-1388.
Texas Pediatric Society Committee on Fetus and Newborn, Perinatal Palliative Care and End-of-Life Web-Based Toolkit.
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. Response: Please, can we have the perinatal hospice approach now.
Thienprayoon R, Schreck B. A Symphony of Life: One Team's Approach to Perinatal Palliative Care. Presentation about using music therapy in perinatal palliative care, American Academy of Pediatrics, October 2015.
Thorvilson MJ, Copeland AJ. Incompatible with care: Examining trisomy 18 medical discourse and families' counter-discourse for recuperative ethos. J Med Humanit (2017). doi:10.1007/s10912-017-9436-6
Toce S. Perinatal palliative care = good care. Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, in collaboration with the National Hospice and Palliative Care Organization, Issue 70. February 2023.
Toce S. The devil is in the details: Implementing an integrated perinatal palliative care process. Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, in collaboration with the National Hospice and Palliative Care Organization, Issue 49. November 2017.
Toce S, Collins MA. The FOOTPRINTS model of pediatric palliative care.J Palliat Med. 2003 Dec;6(6):989-1000.
Todorovic A. Palliative care is not just for those who are dying. BMJ 15 June 2016;353:i2846
Tosello B. Perinatal palliative care in France: Who? Why? How? [Article in French] Arch Pediatr. 2016 Jul 26.
Tosello B et al. Barriers in referring neonatal patients to perinatal palliative care: A French multicenter survey. PLoS One. 2015 May 15;10(5):e0126861.
Tosello B et al. Palliative care birth plan: a field of perinatal medicine to build. Gynecol Obstet Fertil. 2013 Apr;41(4):251-4.
Tosello B et al. Perceptions of lethal fetal abnormality among perinatal professionals and the challenges of neonatal palliative care. J Palliat Med. 2014 Aug;17(8):924-30.
Tosello B, Haddad G, Gire C, Einaudi MA. Lethal fetal abnormalities: how to approach perinatal palliative care? J Matern Fetal Neonatal Med. 2016 May 6:1-13.
Tosello B, Dany L. Psycho-social approach of perinatal palliative care. J Matern Fetal Neonatal Med. 2018 Apr 15:1-121. doi: 10.1080/14767058.2018.1465915.
Tyler M. “Perinatal Palliative Care: A Collaborative Approach,” Greater Cleveland M.D. News, July/August 2008, p. 11.
Urszula Tataj-Puzyna, Maria Węgrzynowska, Maria Ryś, Dorota Sys, Grażyna Bączek & Barbara Baranowska (2022) “This pregnancy makes sense”: Experiences of women who have decided to continue pregnancy after lethal fetal diagnosis, Death Studies, DOI: 10.1080/07481187.2022.2038310
Verling AM, O'Connell O, Nuzum D, Russell N, O'Donoghue K. The Experience of Perinatal Palliative Care in a Large Tertiary-Referral Maternity Hospital. Journal of Pain and Symptom Management, December 2016;52(6):e137–e138.
von der Hude K, Garten L. Psychosocial Support within the Context of Perinatal Palliative Care: The “SORROWFUL” Model. Children. 2023; 10(1):38.
"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.
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.
Watkins D. An alternative to termination of pregnancy. Practitioner 1989 Jul 8;233(1472):990,992.
Watt H. Abortion for life-limiting foetal anomaly: Beneficial when and for whom? Clinical Ethics, Aug. 4, 2016.
Weeks A, Saya S, Hodgson J. Continuing a pregnancy after diagnosis of a lethal fetal abnormality: Views and perspectives of Australian health professionals and parents. Australian and New Zealand Journal of Obstetrics and Gynaecology. 2020.
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.
Wilkinson D et al. Ethical language and decision-making for prenatally diagnosed lethal malformations.
Seminars in Fetal and Neonatal Medicine, 2014 Oct;19(5):306-311.
Widger K, Picot C. Parents' perceptions of the quality of pediatric and perinatal end of life care. Pediatric nursing, 2008;34(1): 53-58.
Wilkinson, D., Thiele, P., Watkins, A. and De Crespigny, L. (2012), Fatally flawed? A review and ethical analysis of lethal congenital malformations. BJOG: An International Journal of Obstetrics & Gynaecology, 2012 Oct;119: 1302–1308.
Williams M. Neonatal Hospice Nursing, Part One: Interview with Jayne Taylor RN, explaining the outpatient perspective and Part Two: Interview with Debra Bolton RNC CLE, the inpatient experience.
Wool C. State of the Science on Perinatal Palliative Care. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 2013 May/June; 42(3):372–382.
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. Clinician Perspectives of Barriers in Perinatal Palliative Care. MCN: The American Journal of Maternal/Child Nursing, January/February 2015;40(1):44-50.
Wool C. Instrument Psychometrics: Parental Satisfaction and Quality Indicators of Perinatal Palliative Care. Journal of Palliative Medicine, 2015 June. Epub ahead of print. doi:10.1089/jpm.2015.0135.
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, Black BP, Woods AB. Quality Indicators and Parental Satisfaction With Perinatal Palliative Care in the Intrapartum Setting After Diagnosis of a Life-Limiting Fetal Condition. ANS Adv Nurs Sci. 2016 Oct/Dec;39(4):346-357.
Wool C, Côté-Arsenault D, Black BP, Denney-Koelsch E, Kim S, Kavanaugh K. Provision of Services in Perinatal Palliative Care: A Multicenter Survey in the United States. Journal of Palliative Medicine. 2016;19(3):279-285.
Wool C, Dudek M. Exploring the Perceptions and the Role of Genetic Counselors in the Emerging Field of Perinatal Palliative Care. Journal of Genetic Counseling. 2013;22(4):533-543.
Wool C, Kain VJ, Mendes J, Carter BS. Quality predictors of parental satisfaction after birth of infants with life-limiting conditions. Acta Paediatrica. 2017;107(2):276-282.
Wool C, Limbo R, Denney-Koelsch EM. “I Would Do It All Over Again”: Cherishing Time and the Absence of Regret in Continuing a Pregnancy after a Life-Limiting Diagnosis. J Clin Ethics. 2018;29(3):227–36.
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.
Wool, C., & Parravicini, E. (2021). Implementation of Quality Indicators of Perinatal/Neonatal Palliative Care One-Year Following Formal Training. Frontiers in Pediatrics, 9, 752971.
Wool C, Parravicini E. The Neonatal Comfort Care Program: Origin and Growth Over 10 Years. Frontiers in Pediatrics. October 2020;8.
Wood D. Preparing expectant parents for perinatal death. 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.
Ziegler TR. A role for community hospitals in providing perinatal palliative care. National Hospice and Palliative Care Organization Pediatric E-Journal, Issue 70. February 2023, 41-45.
Ziegler TR. With love and openness, infant’s death won’t traumatize siblings. Vision. 2019;29(6):8-9.
Ziegler TR, Kuebelbeck A. Close to Home: Perinatal Palliative Care in a Community Hospital. Advances in Neonatal Care. May 2020.
