The offer they can't refuse: parents and perinatal treatment decisions

Seminars in Fetal and Neonatal Medicine

Volumn 13, Issue 5, 2008, Pages 329-334

  Harrison, Helen ^a  

^a NONE   (United States)

Author keywords

Advance directives; Disability; Ethics; Extremely preterm infants; Neonatal outcomes; Palliative care; Parental autonomy; Quality of life

Indexed keywords

ACCESS TO INFORMATION; ARTICLE; DECISION MAKING; DELIVERY ROOM; DISABILITY; HUMAN; INFORMED CONSENT; INTENSIVE CARE; LIVING WILL; MEDICAL ETHICS; NEWBORN CARE; OBSTETRIC CARE; PALLIATIVE THERAPY; PARENT; PATIENT AUTONOMY; PATIENT COUNSELING; PERINATAL CARE; PREMATURITY; QUALITY OF LIFE; RESUSCITATION; UNITED STATES;

DECISION MAKING; HUMANS; INFANT, EXTREMELY LOW BIRTH WEIGHT; INFANT, NEWBORN; INFANT, PREMATURE; MEDICAL FUTILITY; PARENTS; PERSONAL AUTONOMY; QUALITY OF LIFE; RESUSCITATION;

EID: 48949116079     PISSN: 1744165X     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.siny.2008.03.004     Document Type: Article

References (91)

1. Harrison H. Parents and handicapped infants. N Engl J Med 309 (1983) 664-665
2. Tyson J.E., Younes N., Verter J., Wright L.L., and for the National Institute of Child Health and Human Development Neonatal Research Network. Viability, morbidity, and resource use among newborns of 501- to 800-gram birth weight. JAMA 276 (1996) 1645-1651
3. Lucey J.F., Rowan C.A., Shiono P., et al. Fetal infants: the fate of 4172 infants with birth weights of 401 to 500 grams - The Vermont Oxford Experience 1996-2000. Pediatrics 113 (2004) 1559-1566
4. Orfali K., and Gordon E.J. Autonomy gone awry: a cross-cultural study of parents' experiences in neonatal intensive care units. Theor Med 25 (2004) 329-365
5. Orfali K. Parental role in medical decision-making: fact or fiction? A comparative study of ethical dilemmas in French and American neonatal intensive units. Soc Sci Med 58 (2004) 2009-2022
6. Catlin A. Thinking outside the box: prenatal care and the call for a prenatal advance directive. J Perinat Neonat Nurs 19 (2005) 169-176
7. Partridge J.C., Freeman H., Weiss E., and Martinez A.M. Delivery room resusciatation decisions for extremely low birthweight infants in California. J Perinatol 21 (2001) 27-33
8. Singh J.S., Fanaroff J., Andrews B., et al. Resuscitation in the 'gray zone' of viability: determining physician preferences and predicting infant outcomes. Pediatrics 120 (2007) 519-526
9. Bastek T.K., Richardson D.K., Zupancic A.F., and Burns J.P. Parental consultation practices at the border of viability: a regional survey. Pediatrics 116 (2005) 407-413
10. Keenan H.T., Doron M.W., and Seyda B.A. Comparison of mothers' and counselors' perceptions of predelivery counseling for extremely premature infants. Pediatrics 116 (2005) 104-111
11. Fanaroff J.M., Singh J., and Meadow W. Decisions about delivery-room resuscitation (DRR) for premature infants at the limits of viability. PAS 57 (2005) 537
12. Harrison H., and Kositsky A. The Premature Baby Book (1983), St. Martin's Press, New York
13. Intensive Concern: Parents and Physicians Discuss Neonatology. A Special Ross Conference. June 28-29, 1992, Burlington, VT.
14. Harrison H. The principles for family-centered neonatal care. Pediatrics 92 (1993) 643-650
15. Wisconsin Association for Perinatal Care. Position Statement: Guidelines for the responsible utilization of neonatal intensive care. Available from: (1997). http//www.perinatalweb.org/content view/23/41/
16. Colorado Collective for Medical Decisions. Guidelines for the management of low birth weight/early gestational age newborns (23-26 weeks, 400-750 grams). Revised Neonatal Guidelines (3/20/1997), CCMD, Denver, Colorado 777 Grant Street, Suite 206, 80203
17. American Academy of Pediatrics, Committee on Fetus and Newborn, American College of Obstetricians and Gynecologists, and and Committee of Obstetric Practice. Perinatal care at the threshold of viability. Pediatrics 96 (1995) 974-976
18. Soll R.F. Vermont Oxford Network: clinical trials and follow-up. Presented at the Vermont Oxford Network 2006 Annual Meeting, Washington, DC, December 2, 2006.
19. Vohr B.R., Wright L.L., Poole K., McDonald S.A., and for the NICHD Neonatal Research Network Follow-up Study. Neurodevelopmental outcomes of extremely low birth weight infants <32 weeks' gestation between 1993 and 1998. Pediatrics 116 (2005) 635-643
20. Hefferman P., and Heilig S. Giving 'moral distress' a voice: ethical concerns among neonatal intensive care unit personnel. Camb Q Healthc Ethics 8 (1999) 173-178
21. Penticuff J.H. The impact of the child abuse amendments on nursing staff and their care of handicapped newborns. In: Caplan A.L., Blank R.H., and Merrick J.C. (Eds). Compelled Compassion (1992), Humana Press, Totowa, N.J. 267-284
22. Whitfield M.F., and Grunau R.E. Behavior, pain perception, and the extremely low-birth weight survivor. Clin Perinatol 27 (2000) 363-379
23. Anand K.J.S. Pain, plasticity, and premature birth: a prescription for permanent suffering?. Nature Medicine 6 (2000) 971-973
24. Anand K.J., and Soriano S.G. Anesthetic agents and the immature brain: are these toxic or therapeutic?. Anesthesiology 101 (2004) 527-530
25. Peterson B.S. Brain imaging studies of the anatomical and functional consequences of preterm birth for human brain development. Ann NY Acad Sci 1008 (2003) 219-237
26. Inder T.E., Wells S.J., Mogridge N.B., Spencer C., and Volpe J.J. Defining the nature of the cerebral abnormalities in the premature infant: a qualitative magnetic resonance imaging study. J Pediatr 143 (2003) 171-179
27. Limperopoulos C., Bassan H., Gauvreau K., et al. Does cerebellar injury in premature infants contribute to the high prevalence of cognitive, learning and behavioral disability in survivors?. Pediatrics 120 (2007) 548-593
28. Messerschmidt A., Brugger P.C., Bolthauser E., et al. Disruption of cerebellar development: potential complication of extreme prematurity. Am J Neuroradiol 26 (2005) 1659-1667
29. Kopelman L.M., Irons T.G., and Kopelman A.E. Neonatologists judge the 'Baby Doe' regulations. N Engl J Med 318 (1988) 677-683
30. Finer N.N., Craft A., Vaucher Y.E., Clark R.H., and Sola A. Postnatal steroids: short term gain, long-term pain?. J Pediatr 137 (2000) 9-13
31. Jobe A.H. Glucocorticoids in perinatal medicine:misguided rockets?. J Pediatr 137 (2000) 1-3
32. Lantos J.D. Hooked on neonatology: a pediatrician wonders about NICUs' hidden cost of success. Health Affairs 20 (2001) 233-240
33. Simpson J. Response to 'Neonatal Viability in the 1990s: Held Hostage by Technology' by Jonathan Muraskas, et al. and 'Giving Moral Distress a Voice: Ethical Concerns among Neonatal Intensive Care Unit Personnel' by Pam Hefferman and Steve Heilig (CQ Vol 8, No 2). Camb Q Healthc Ethics 8 (1999) 524-526
34. Silverman W.A. Is neonatal medicine in the United States out of step?. Pediatrics 92 (1993) 612-613 [letter]
35. Vohr B.R., Wright L.L., Dusick A.M., et al. Neurodevelopmental and functional outcomes of extremely low birth weight infants in the National Institute of Child Health and Human Development Network, 1993-1994. Pediatrics 105 (2000) 1216-1226
36. Hack M., and Fanaroff A.A. Outcomes of children of extremely low birthweight and gestational age in the 1990s. Early Hum dev 53 (1999) 193-218
37. Emsley H.C., Wardle S.P., Sims D.G., Chiswick M.L., and D'Souza S.W. Increased survival and deteriorating outcome in 23 to 25 week gestation infants, 1990-94 compared with 1984-89. Arch Dis Child Fetal Neonatal Ed. 78 (1998) F99-F104
38. Schivas T. Report on media coverage of prematurity (table 1, p. 173). In: Catlin A. (Ed). Thinking outside the box: prenatal care and the call for a prenatal advance directive. J Perinat Neonat Nurs 19 (2005) 169-176
39. St. Joseph's Children's Hospital. The Littlest Miracles (2007), Health Connection, Marshfield, Wisconsin p. 9
40. Healy B. The cry of the children. US News and World Report (26 August 2007). http://health.usnews.com/usnews/health/articles/070826/3healy.htm Available from:
41. Saigal S., Feeny D., Rosenbaum P., Furlong W., Burrows E., and Stoskopf B. Self-perceived health status and health-related quality of life of teenage children who were extremely low-birth-weight infants at adolescence. JAMA 276 (1996) 453-459
42. Saigal S., Stoskopf B., Pinelli J., et al. Self-perceived health-related quality of life of former extremely low birth weight infants at young adulthood. Pediatrics 118 (2006) 1140-1148
43. Kaempf J.W., and Tomlinson M. Long-term health outcomes of extremely premature infants. Pediatrics 119 (2007) 410-411 [letter]
44. Saigal S. Report to health professionals: quality of life research (15 January 1996), Children's Hospital at Chedoke McMaster, Hamilton, Ontario
45. Saigal S., Stoskopf B., Hoult L., et al. Long-term health outcomes of extremely premature infants: in reply. Pediatrics 119 (2007) 411-412
46. Bushman B.J., and Baumeister R.F. Does self-love or self-hate lead to violence?. J Res Pers 36 (2002) 543-545
47. Sommers C.H. 'The Self-Esteem Study' in who stole feminism? (1994), Simon and Schuster, New York 137-156
48. Abrantes-Pais F de N., Friedman J.K., Lovallo W.R., and Ross E.D. Psychological or physiological: why are tetraplegic patients content?. Neurology 69 (2007) 261-267
49. Grootendorst P.V., Feeny D.H., and Furlong W. Does it matter whom and how you ask? inter- and intra-rater agreement in the Ontario Health Survey. J Clin Epidemiol 50 (1997) 127-135
50. Brown M.D., Wernovsky G., Mussatto K.A., and Berger S. Long-term and developmental outcomes of children with complex congenital heart disease. Clin Perinatol 32 (2005) 1043-1057
51. Owens P.L., Bradley E.H., Horwitz S.M., et al. Cinical assessment of function among women who with a recent cardiovascular event; a self-reported versus performance-based measure. Ann Intern Med 136 (2002) 802-811
52. Becchi A., Rucci P., Placentino A., Neri G., and de Girolama G. Quality of life in patients with schizophrenia - comparison of self-report and proxy assessments. Soc Psychiatry Psychiatr Edpidemiol 39 (2004) 397-401
53. Allin M., Rooney M., Cuddy M., et al. Personality in young adults who are born preterm. Pediatrics 117 (2006) 309-316
54. Harrison H. Extremely low-birth-weight infants at adolescence: health status and quality of life. JAMA 276 (1996) 1722-1723 [letter]
55. Saigal S., Rosenbaum P., Stoskopf B., and Hoult L. Cognitive abilities and school performance of a regional cohort of adolescent extremely low birth weight and control children. Pediatr Res 37 (1995) 271A [abstract]
56. Saigal S., Hoult L.A., Streiner D.L., Stoskopf B.L., and Rosenbaum P.L. School difficulties at adolescence in a regional cohort of children who were extremely low birth weight. Pediatrics 105 (2000) 325-331
57. Saigal S., Rosenbaum P., Stoskopf B., et al. Comprehensive health status of extremely low birth weight children at eight years of age: comparison with a reference group. J Pediatr 125 (1994) 411-417
58. Colman I., Ploubidas G.B., Wadsworth M.E.J., Jones P.B., and Croudace T.J. A longitudinal typology of symptoms of depression and anxiety over the life course. Biol Psychiatry 62 (2007) 1265-1271
59. Indredavik M.S., Vik T., Hyerdahl S., Kulseng S., Fayers P., and Brubakk A.M. Psychiatric symptoms and disorders in adolescents with low birth weight. Arch Dis Child Fetal Neonatal Ed 89 (2004) F451-F455
60. Harrison H. Making lemonade: a parent's view of 'quality of life' studies. J Clin Ethics 12 (2001) 239-250
61. Harrison H. Coping mechanisms and quality of life. Virtual Mentor 8 (2006) 319-322. Available from: http://virtualmentor.ama-assn.org/2006/05/jdsc1-0605.html - 19.5KB
62. Culver G., Fallon K., Londner R.B., et al. Informed decisions for extremely low-birth-weight infants. JAMA 283 (2000) 3201-3202 [letter]
63. Walther F.J., den Ouden A.L., and Verloove-Vanhorick S.P. Looking back in time: outcome of a national cohort of very preterm infants born in the Netherlands in 1983. Early Hum Dev 59 (2000) 175-191
64. Marlow N., Wolke D., Bracewell M.A., Samara M., and for the EPICure Study Group. Neurologic and developmental disability at six years of age after extremely preterm birth. N Engl J Med 352 (2005) 9-19
65. O'Brien F., Roth S., Stewart A., Rifkin L., Rushe T., and Wyatt J. The neurodevelopmental progress of infants less than 33 weeks into adolescence. Arch Dis Child 89 (2004) 207-211
66. Epel E.S., Blackburn E.H., Lin J., Dhabar F.S., Adler N.E., and Morrow J.D. Accelerated telomere shortening in response to life stress. PNAS 101 (2004) 17312-17315
67. Berman S., Davis P., Koufman-Frederick A., and Urion D. The rising costs of special education in Massachusetts: causes and effects. In: Finn C.E., Rotherham A.J., and Hokanson C.R. (Eds). Rethinking Special Education for a New Century (2001), Progressive Policy Institute & The Thomas B. Fordham Foundation, Washington, DC 183-211
68. Catlin A.J. Home care for the high-risk neonate: success of failure depends on home health nurse funding and availability. Home Healthc Nurse 25 (2007) 1-5
69. Catlin A. Extremely long hospitalizations of newborns in the United States: data, descriptions, dilemmas. J Perinatol 26 (2006) 742-748
70. Ansberry C. Babes among elders. Wall St J (28 June 2007) pA1
71. Dribben M. Fragile: handle with caring. The Philadelphia Inquirer 2007. Available from: (18 July 2007). http://www.philly.com/inquirer/local/20070718_Fragile_Handle_with_caring .html
72. Hunter M. Preemies: Baby Doe law creates miracles - at a cost. The American, Available from: (1998). http://www.pediatricservices.com/prof/prof-01.htm
73. The Boston Channel. Rising special ed costs place heavy burdens educators say all students hurt. Available from: (27 September 2007). http://www.thebostonchannel.com/investigative/14223930/detail.html
74. Trosclair J. When 'aging out' of special education means nowhere to go. Available from: (27 September 2007). http://www.arcofca.org [Press Release]
75. Catlin A.J. Physicians' neonatal resuscitation of extremely low-birth-weight preterm infants. J Nurs Scholarsh 31 (1999) 269-275
76. Sayeed S.A. Baby Doe redux? The Department of Health and Human Services and the Born-alive Infants Protection Act of 2002: a cautionary note on normative neonatal practice. Pediatrics 116 (2005) e576-e585
77. Leuthner S.R. Fetal palliative care. Clin Perinatol 31 (2004) 649-665
78. Donovan E.F., Tyson J.E., Ehrenkranz R.A., et al. Inaccuracy of the Ballard scores before 28 weeks' gestation: National Institute of Child Health and Human Development Neonatal Research Network. J Pediatr 135 (1999) 147-152
79. Perrotta L. Letter to the editor. J Perinatol 15 (1995) 519-520
80. Voss W., Neubauer A.P., Wachtendorf M., Verhey J.F., and Kattner E. Neurodevelopmental outcome in extremely low birth weight infants: what is the minimum age for reliable developmental prognosis?. Acta Paediatr 96 (2007) 342-347
81. Streiner D.L., Saigal S., Burrows E., Stoskopf B., and Rosenbaum P. Attitudes of parents and health care professionals toward active treatment of extremely premature infants. Pediatrics 108 (2001) 152-157
82. Montello M., and Lantos J. The Karamzov complex: Dostoevsky and DNR orders. Perspect Biol Med 45 (2002) 190-199
83. Guyer R.L. Baby at risk: The uncertain legacies of medical miracles for babies, families, and Society (2007), Capital Books, Herndon, VA
84. Palomaki G.E., Haddow J.E., and Beauregard L.J. Prenatal screening for Down's syndrome in Maine, 1980 to 1993. N Engl J Med 334 (1996) 1409-1410 [letter]
85. Palomaki G.E., Williams J.R., and Haddow J.E. Prenatal screening for open neural-tube defects in Maine. N Engl J Med 340 (1999) 1049-1050 [letter]
86. O' Donnell M. One man's burden. BMJ 286 (1983) 1291
87. Koh T.H.H.G., Harrison H., and Morley C. Gestation versus outcome table for parents of extremely premature infants. J Perinatol 19 (1999) 452-453
88. Singh J., Lantos J., and Meadow W. End-of-life after birth: death and dying in a neonatal intensive care unit. Pediatrics 114 (2004) 1620-1626
89. Catlin A., and Carter B. Creation of a neonatal end-of-life palliative care protocol. J Perinatol 22 (2002) 184-195
90. Kaempf J.W., Tomlinson M., Arduza C., et al. Medical staff guidelines for periviability pregnancy counseling and medical treatment of extremely premature infants. Pediatrics 117 (2006) 22-29
91. Koh T.H.H.G., Butow P.N., Coory M., et al. Provision of taped conversations with neonatologists to mothers of babies in intensive care: randomised controlled trial. BMJ 334 7583 (2007) 28