Making a case: Creating a perinatal palliative care service using a perinatal bereavement program model

Journal of Perinatal and Neonatal Nursing

Volumn 25, Issue 1, 2011, Pages 32-41

  Kobler, Kathie ^a   Limbo, Rana ^b  

^a ADVOCATE LUTHERAN GENERAL HOSPITAL   (United States)

^b GUNDERSEN LUTHERAN MEDICAL CENTER   (United States)

Author keywords

MeSH Bereavement; congenital abnormalities; palliative care; perinatal care; program development

Indexed keywords

ATTITUDE TO DEATH; BEREAVEMENT; FEMALE; HEALTH CARE QUALITY; HUMAN; HUMAN RELATION; MODEL; NONBIOLOGICAL MODEL; NURSE ATTITUDE; NURSING EVALUATION RESEARCH; NURSING STAFF; ORGANIZATION AND MANAGEMENT; PALLIATIVE THERAPY; PERINATAL CARE; PREGNANCY; PSYCHOLOGICAL ASPECT; PUBLIC RELATIONS; REVIEW; SOCIAL SUPPORT; STILLBIRTH; UNITED STATES;

ATTITUDE TO DEATH; BEREAVEMENT; FEMALE; HUMANS; ILLINOIS; INTERPROFESSIONAL RELATIONS; MODELS, NURSING; MODELS, ORGANIZATIONAL; NURSE'S ROLE; NURSING EVALUATION RESEARCH; NURSING STAFF, HOSPITAL; PALLIATIVE CARE; PERINATAL CARE; PREGNANCY; PROFESSIONAL-FAMILY RELATIONS; PROGRAM EVALUATION; SOCIAL SUPPORT; STILLBIRTH;

EID: 79951860107     PISSN: 08932190     EISSN: None     Source Type: Journal    
DOI: 10.1097/JPN.0b013e3181fb592e     Document Type: Review

References (51)

1. Friebert S. NHPCO Facts and Figures: Pediatric Palliative and Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization; 2009.
2. Weissman DE, Meier DE, Spragens LH. Center to advance palliative care consultation service metrics: consensus recommendations. J Palliat Med. 2008;11(10):1294-1298.
3. 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;20:113-116. (Pubitemid 43964594)
4. Limbo R, Kobler K. The tie that binds: relationships in perinatal bereavement. MCN Am J Matern Child Nurs. 2010; 35(6):316-321.
5. Limbo R, Toce S, Peck T. Resolve Through Sharing Position Paper on Perinatal Palliative Care. LaCrosse, WI: Gundersen Lutheran Medical Foundation Inc; 2008/2009. http://bereavementservices.org/research-resources/rts-perina tal-palliative-care-position-paper. Accessed July 6, 2010.
6. Toce S, Collins MA. The FOOTPRINTS model of pediatric palliative care. J Palliat Med. 2003;6(6):989-1000. (Pubitemid 38133261)
7. Sumner LH. Pediatric hospice and palliative care. In:Ferrell BR, Coyle N, eds. Oxford Textbook of Palliative Nursing. New York, NY: Oxford University Press; 2010:997-1017.
8. MacDorman MF, Kimeyer S. Fetal and perinatal mortality United States, 2005. Natl Vital Stat Rep. 2009;57(8):1-20. http://www.cdc.gov/nchs/data/nvsr/ nvsr57/nvsr57-08.pdf. Accessed July 6, 2010.
9. Mathews TJ, MacDorman MF. Infant mortality statistics from the 2005 period linked birth/infant death data set. Natl Vital Stat Rep. 2008;57(2):1-32. http://www.cdc.gov/nchs/ data/nvsr/nvsr57/nvsr57-02.pdf. Accessed July 6, 2010.
10. Lake M, Knuppel RA, Murphy J, Johnson TM. The role of a grief support team following stillbirth. Am J Obstet Gynecol. 1983;146(8):877-881. (Pubitemid 13037257)
11. Limbo R, Goettl KH, Smiley C, Wheeler SR. Resolve Through Sharing Counselor's Certification Manual. La Crosse, WI: La Crosse Lutheran Hospital; 1984.
12. Browning DM, Solomon MZ. Relational learning in pediatric palliative care: transformative education and the culture of medicine. Child Adolesc Psychiatr Clin N Am. 2006;15:795-815.
13. Daley M, Limbo R, eds. RTS Bereavement Training in Early Pregnancy Loss, Stillbirth, and Newborn Death. La Crosse, WI: Gundersen Lutheran Medical Foundation, Inc; 2008.
14. Gensch BK, Midland D. When a baby dies: a standard of care. Illn Crises Loss. 2000;8(3):286-295.
15. DiMarco M, Renker P, Medas J, Bertosa H, Goranitis JL. Effects of an educational bereavement program on healthcare professionals' perceptions of perinatal loss. J Contin Educ Nurs. 2002;33(4):180-186.
16. Feudtner C, Santucci G, Feinstein JA, Snyder CR, Rourke MT, Kang TI. Hopeful thinking and level of comfort regarding providing pediatric palliative care: a survey of hospital nurses. Pediatrics. 2007;119(1):e186-e192. (Pubitemid 46397824)
17. Gold KJ, Dalton VK, Schwenk TL. Hospital care for parents after perinatal death. Obstet Gynecol. 2007;109(5): 1156-1166. (Pubitemid 46685961)
18. Field MJ, Behrman RE, eds. Executive summary. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press; 2003:1-41. http://books.nap.edu/ openbook.php?record-id=10390&page=1. Accessed July 6, 2010.
19. Boss R, Kavanaugh K, Kobler K. Prenatal and neonatal palliative care. In: Wolfe J, Hinds P, Sourkes B, eds. Textbook of Interdisciplinary Pediatric Palliative Care. Philadelphia, PA: Saunders; 2011:387-401.
20. Friebert S, Osenga K. Pediatric palliative care referral criteria. CAPC Clin Tools; 2009. http://www.capc.org/tools-for-palliative-care-programs/ clinical-tools/consult-triggers/ pediatric-palliative-care-referral-criteria. doc. Accessed July 30, 2009.
21. Munson D, Leuthner SR. Palliative care for the family carrying a fetus with a life-limiting diagnosis. Pediatr Clin North Am. 2007;54:787-798, xii.
22. Leuthner S, Jones EL. Fetal concerns program: a model for perinatal palliative care. MCN Am J Matern Child Nurs. 2007;32:272-278.
23. Pierucci RL, Kirby RS, Leuthner SR. End-of-life care for neonates and infants: the experience and effects of a palliative care consultation service. Pediatrics. 2001;108(3):653-660. (Pubitemid 32786594)
24. Ramer-Chrastek J, Thygeson MV. A perinatal hospice for an unborn child with a life-limiting condition. Int J Palliat Nurs. 2005;11(6):274-276.
25. Milstein J. A paradigm of integrative care: healing with curing throughout life, "being with" and "doing to." J Perinatol. 2005;25:563-568.
26. Kauffman SG, Hauck CB, Mandel DA. Perinatal palliative care. Nurs Womens Health. 2010;14(3):188-197.
27. Howard ED. Family-centered care in the context of fetal abnormality. J Perinat Neonat Nurs. 2006;20(3):237-242.
28. McGrath JM. Why having an attitude of innovation is important in the neonatal intensive care unit. J Perinat Neonatal Nurs. 2010;24(3):199-200.
29. Rogers EM. Diffusion of Innovations. 5th ed. New York, NY: Free Press; 2003.
30. Swanson-Kauffman KM. Caring in the instance of unexpected early pregnancy loss. Top Clin Nurs. 1986;8(2):37-46.
31. Knapp CA, Thompson LA, Vogel WB, Madden VL, Shenkman EA. Developing a pediatric palliative care program: addressing the lack of baseline expenditure information. Am J Hosp Palliat Care. 2009;26(1):40-46.
32. Hammes BJ, Rooney BL, Gundrum JD. A comparative, retrospective, observational study of the prevalence, availability, and specificity of advance care plans in a county that implemented an advance care planning microsystem. J Am Geriatr Soc. 2010;58:1250-1255.
33. McGraw MP, Perlman JM. Attitudes of neonatologists toward delivery room management of a confirmed Trisomy 18: potential factors influencing a changing dynamic. Pediatrics. 2008;121(6):1106-1110.
34. The Joint Commission. Joint Commission Edition, May 4, 2010. http://www.jointcommission.org/Standards/Manuals/. Accessed July 5, 2010.
35. National Hospice and Palliative Care Organization (NHPCO). Standards of Practice for Pediatric Palliative Care and Hospice; 2009. http://www.nhpco.org/ i4a/pages/index. cfm?pageID=5874. Accessed June 29. 2009.
36. Ekelin M, Crang-Svalenius E, Nordström B, Dykes AK. Parents' experiences, reactions and needs regarding a nonviable fetus diagnoses at a second trimester ultrasound. J Obstet Gynecol Neonatal Nurs. 2008;37(4):446-454.
37. Leuthner SR. Palliative care of the infant with lethal anomalies. Pediatr Clin North Am. 2004;51:747-759, xi.
38. Breeze AC, Lees CC, Kumar A, Missfelder-Lobos HH, Murdoch EM. Palliative care for prenatally diagnosed lethal fetal abnormality. Arch Dis Child Fetal Neonatal Ed. 2007;92:F56-F58. (Pubitemid 46132973)
39. D'Almeida M, Hume RF, Lathrop A, Njoku A, Calhoun BC. Perinatal hospice: family-centered care of the fetus with a lethal condition. J Am Phys Surg. 2006;11(2):52-55.
40. Kenner C, Boykova M. Palliative care in the neonatal intensive care unit. In: Ferrell BR, Coyle N, eds. Oxford Textbook of Palliative Nursing. New York, NY: Oxford University Press; 2010:1065-1080.
41. American Association of Colleges of Nursing. City of hope. Perinatal and neonatal palliative care. In: ELNEC: Pediatric Palliative Care. Washington, DC: American Association of Colleges of Nursing; 2009: Module 2.
42. Synder CR. Hope theory: rainbows in the mind. Psychol Inq. 2002;13(4):249-275.
43. Reder EA, Serwint JR. Until the last breath: exploring the concept of hope for parents and healthcare professionals during a child's serious illness. Arch Pediatr Adolesc Med. 2009;163(7):653-657.
44. Boss RD, Hutton N, Sulpar LJ, West AM, Donohue PK. Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns. Pediatrics. 2008;122(3):583-589.
45. Toce S. Focus on living: the role of antenatal advance care planning. In:Corr CA, Torkildson C, eds. ChiPPS Pediatric Palliative Care Newsletter; 2007:6. http://nhpco.org/i4a/pages/ index.cfm?pageid = 4657. Accessed July 6, 2010.
46. Catlin A. Thinking outside the box: prenatal care and the call for a prenatal advance directive. J Perina Neonatal Nurs. 2005;19(2):169-176. (Pubitemid 40806990)
47. Toce S, Leuthner SR, Dokken D, Carter BS, Catlin A. The high risk newborn. In:Carter BS, Levetown M, eds. Palliative Care for Infants, Children and Adolescents. Baltimore, MD: The Johns Hopkins University Press; 2004:247-272.
48. Wrede-Seaman L. Pediatric Pain and Symptom Management Algorithms for Palliative Care. Yakima, Washington, DC: Intellicard; 2005.
49. Davies B, Sehring SA, Partridge JC et al. Barriers to palliative care for children: perceptions of pediatric health providers. Pediatrics. 2008;121(2):282-288. (Pubitemid 351198450)
50. Coker TR, Rodriguez MA, Flores G. Family-centered care for US children with special healthcare needs: who gets it and why? Pediatrics. 2010;125(6):1159-1167.
51. Gale G, Brooks A. Implementing a palliative care program in a newborn intensive care unit. Adv Neonatal Care. 2006;6(1):37-53. (Pubitemid 43176658)