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

Harrison, 1983, Parents and handicapped infants, N Engl J Med, 309, 664, 10.1056/NEJM198309153091113 Tyson, 1996, Viability, morbidity, and resource use among newborns of 501- to 800-gram birth weight, JAMA, 276, 1645, 10.1001/jama.276.20.1645 Lucey, 2004, Fetal infants: the fate of 4172 infants with birth weights of 401 to 500 grams – The Vermont Oxford Experience 1996–2000, Pediatrics, 113, 1559, 10.1542/peds.113.6.1559 Orfali, 2004, Autonomy gone awry: a cross-cultural study of parents' experiences in neonatal intensive care units, Theor Med, 25, 329, 10.1007/s11017-004-3135-9 Orfali, 2004, 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, 2009, 10.1016/S0277-9536(03)00406-4 Catlin, 2005, Thinking outside the box: prenatal care and the call for a prenatal advance directive, J Perinat Neonat Nurs, 19, 169, 10.1097/00005237-200504000-00014 Partridge, 2001, Delivery room resusciatation decisions for extremely low birthweight infants in California, J Perinatol, 21, 27, 10.1038/sj.jp.7200477 Singh, 2007, Resuscitation in the ‘gray zone’ of viability: determining physician preferences and predicting infant outcomes, Pediatrics, 120, 519, 10.1542/peds.2006-2966 Bastek, 2005, Parental consultation practices at the border of viability: a regional survey, Pediatrics, 116, 407, 10.1542/peds.2004-1427 Keenan, 2005, Comparison of mothers' and counselors' perceptions of predelivery counseling for extremely premature infants, Pediatrics, 116, 104, 10.1542/peds.2004-1340 Fanaroff, 2005, Decisions about delivery-room resuscitation (DRR) for premature infants at the limits of viability, PAS, 57, 537 Harrison, 1983 Intensive Concern: Parents and Physicians Discuss Neonatology. A Special Ross Conference. June 28–29, 1992, Burlington, VT. Harrison, 1993, The principles for family-centered neonatal care, Pediatrics, 92, 643, 10.1542/peds.92.5.643 Wisconsin Association for Perinatal Care Colorado Collective for Medical Decisions, 1997 American Academy of Pediatrics, 1995, Perinatal care at the threshold of viability, Pediatrics, 96, 974, 10.1542/peds.96.5.974 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. Vohr, 2005, Neurodevelopmental outcomes of extremely low birth weight infants <32 weeks' gestation between 1993 and 1998, Pediatrics, 116, 635, 10.1542/peds.2004-2247 Hefferman, 1999, Giving ‘moral distress’ a voice: ethical concerns among neonatal intensive care unit personnel, Camb Q Healthc Ethics, 8, 173, 10.1017/S0963180199802060 Penticuff, 1992, The impact of the child abuse amendments on nursing staff and their care of handicapped newborns, 267 Whitfield, 2000, Behavior, pain perception, and the extremely low-birth weight survivor, Clin Perinatol, 27, 363, 10.1016/S0095-5108(05)70026-9 Anand, 2000, Pain, plasticity, and premature birth: a prescription for permanent suffering?, Nature Medicine, 6, 971, 10.1038/79658 Anand, 2004, Anesthetic agents and the immature brain: are these toxic or therapeutic?, Anesthesiology, 101, 527, 10.1097/00000542-200408000-00033 Peterson, 2003, Brain imaging studies of the anatomical and functional consequences of preterm birth for human brain development, Ann NY Acad Sci, 1008, 219, 10.1196/annals.1301.023 Inder, 2003, Defining the nature of the cerebral abnormalities in the premature infant: a qualitative magnetic resonance imaging study, J Pediatr, 143, 171, 10.1067/S0022-3476(03)00357-3 Limperopoulos, 2007, Does cerebellar injury in premature infants contribute to the high prevalence of cognitive, learning and behavioral disability in survivors?, Pediatrics, 120, 548, 10.1542/peds.2007-1041 Messerschmidt, 2005, Disruption of cerebellar development: potential complication of extreme prematurity, Am J Neuroradiol, 26, 1659 Kopelman, 1988, Neonatologists judge the ‘Baby Doe’ regulations, N Engl J Med, 318, 677, 10.1056/NEJM198803173181105 Finer, 2000, Postnatal steroids: short term gain, long-term pain?, J Pediatr, 137, 9, 10.1067/mpd.2000.107799 Jobe, 2000, Glucocorticoids in perinatal medicine:misguided rockets?, J Pediatr, 137, 1, 10.1067/mpd.2000.107801 Lantos, 2001, Hooked on neonatology: a pediatrician wonders about NICUs' hidden cost of success, Health Affairs, 20, 233, 10.1377/hlthaff.20.5.233 Simpson, 1999, 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, 524, 10.1017/S0963180199004144 Silverman, 1993, Is neonatal medicine in the United States out of step?, Pediatrics, 92, 612, 10.1542/peds.92.4.612 Vohr, 2000, 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, 1216, 10.1542/peds.105.6.1216 Hack, 1999, Outcomes of children of extremely low birthweight and gestational age in the 1990s, Early Hum dev, 53, 193, 10.1016/S0378-3782(98)00052-8 Emsley, 1998, 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, F99, 10.1136/fn.78.2.F99 Schivas, 2005, Report on media coverage of prematurity (table 1, p. 173), J Perinat Neonat Nurs, 19, 169 St. Joseph's Children's Hospital, 2007 Healy, 2007, The cry of the children, US News and World Report Saigal, 1996, Self-perceived health status and health-related quality of life of teenage children who were extremely low-birth-weight infants at adolescence, JAMA, 276, 453, 10.1001/jama.276.6.453 Saigal, 2006, Self-perceived health-related quality of life of former extremely low birth weight infants at young adulthood, Pediatrics, 118, 1140, 10.1542/peds.2006-0119 Kaempf, 2007, Long-term health outcomes of extremely premature infants, Pediatrics, 119, 410, 10.1542/peds.2006-3079 Saigal, 1996 Saigal, 2007, Long-term health outcomes of extremely premature infants: in reply, Pediatrics, 119, 411, 10.1542/peds.2006-3225 Bushman, 2002, Does self-love or self-hate lead to violence?, J Res Pers, 36, 543, 10.1016/S0092-6566(02)00502-0 Sommers, 1994 Abrantes-Pais F de, 2007, Psychological or physiological: why are tetraplegic patients content?, Neurology, 69, 261, 10.1212/01.wnl.0000262763.66023.be Grootendorst, 1997, Does it matter whom and how you ask? inter- and intra-rater agreement in the Ontario Health Survey, J Clin Epidemiol, 50, 127, 10.1016/S0895-4356(96)00314-9 Brown, 2005, Long-term and developmental outcomes of children with complex congenital heart disease, Clin Perinatol, 32, 1043, 10.1016/j.clp.2005.09.008 Owens, 2002, Cinical assessment of function among women who with a recent cardiovascular event; a self-reported versus performance-based measure, Ann Intern Med, 136, 802, 10.7326/0003-4819-136-11-200206040-00008 Becchi, 2004, Quality of life in patients with schizophrenia – comparison of self-report and proxy assessments, Soc Psychiatry Psychiatr Edpidemiol, 39, 397, 10.1007/s00127-004-0761-5 Allin, 2006, Personality in young adults who are born preterm, Pediatrics, 117, 309, 10.1542/peds.2005-0539 Harrison, 1996, Extremely low-birth-weight infants at adolescence: health status and quality of life, JAMA, 276, 1722, 10.1001/jama.276.21.1722 Saigal, 1995, Cognitive abilities and school performance of a regional cohort of adolescent extremely low birth weight and control children, Pediatr Res, 37, 271A Saigal, 2000, School difficulties at adolescence in a regional cohort of children who were extremely low birth weight, Pediatrics, 105, 325, 10.1542/peds.105.2.325 Saigal, 1994, Comprehensive health status of extremely low birth weight children at eight years of age: comparison with a reference group, J Pediatr, 125, 411, 10.1016/S0022-3476(05)83288-3 Colman, 2007, A longitudinal typology of symptoms of depression and anxiety over the life course, Biol Psychiatry, 62, 1265, 10.1016/j.biopsych.2007.05.012 Indredavik, 2004, Psychiatric symptoms and disorders in adolescents with low birth weight, Arch Dis Child Fetal Neonatal Ed, 89, F451, 10.1136/adc.2003.038943 Harrison, 2001, Making lemonade: a parent's view of ‘quality of life’ studies, J Clin Ethics, 12, 239, 10.1086/JCE200112307 Harrison, 2006, Coping mechanisms and quality of life, Virtual Mentor, 8, 319, 10.1001/virtualmentor.2006.8.5.jdsc1-0605 Culver, 2000, Informed decisions for extremely low-birth-weight infants, JAMA, 283, 3201, 10.1001/jama.283.24.3201 Walther, 2000, Looking back in time: outcome of a national cohort of very preterm infants born in the Netherlands in 1983, Early Hum Dev, 59, 175, 10.1016/S0378-3782(00)00094-3 Marlow, 2005, Neurologic and developmental disability at six years of age after extremely preterm birth, N Engl J Med, 352, 9, 10.1056/NEJMoa041367 O'Brien, 2004, The neurodevelopmental progress of infants less than 33 weeks into adolescence, Arch Dis Child, 89, 207, 10.1136/adc.2002.006676 Epel, 2004, Accelerated telomere shortening in response to life stress, PNAS, 101, 17312, 10.1073/pnas.0407162101 Berman, 2001, The rising costs of special education in Massachusetts: causes and effects, 183 Catlin, 2007, Home care for the high-risk neonate: success of failure depends on home health nurse funding and availability, Home Healthc Nurse, 25, 1, 10.1097/00004045-200702000-00015 Catlin, 2006, Extremely long hospitalizations of newborns in the United States: data, descriptions, dilemmas, J Perinatol, 26, 742, 10.1038/sj.jp.7211617 Ansberry, 2007, Babes among elders, Wall St J, pA1 Dribben Hunter The Boston Channel Trosclair Catlin, 1999, Physicians' neonatal resuscitation of extremely low-birth-weight preterm infants, J Nurs Scholarsh, 31, 269, 10.1111/j.1547-5069.1999.tb00496.x Sayeed, 2005, 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, e576, 10.1542/peds.2005-1590 Leuthner, 2004, Fetal palliative care, Clin Perinatol, 31, 649, 10.1016/j.clp.2004.04.018 Donovan, 1999, Inaccuracy of the Ballard scores before 28 weeks' gestation: National Institute of Child Health and Human Development Neonatal Research Network, J Pediatr, 135, 147, 10.1016/S0022-3476(99)70015-6 Perrotta, 1995, Letter to the editor, J Perinatol, 15, 519 Voss, 2007, Neurodevelopmental outcome in extremely low birth weight infants: what is the minimum age for reliable developmental prognosis?, Acta Paediatr, 96, 342, 10.1111/j.1651-2227.2006.00130.x Streiner, 2001, Attitudes of parents and health care professionals toward active treatment of extremely premature infants, Pediatrics, 108, 152, 10.1542/peds.108.1.152 Montello, 2002, The Karamzov complex: Dostoevsky and DNR orders, Perspect Biol Med, 45, 190, 10.1353/pbm.2002.0036 Guyer, 2007 Palomaki, 1996, Prenatal screening for Down's syndrome in Maine, 1980 to 1993, N Engl J Med, 334, 1409, 10.1056/NEJM199605233342117 Palomaki, 1999, Prenatal screening for open neural-tube defects in Maine, N Engl J Med, 340, 1049, 10.1056/NEJM199904013401318 O' Donnell, 1983, One man's burden, BMJ, 286, 1291, 10.1136/bmj.286.6382.1975-b Koh, 1999, Gestation versus outcome table for parents of extremely premature infants, J Perinatol, 19, 452, 10.1038/sj.jp.7200208 Singh, 2004, End-of-life after birth: death and dying in a neonatal intensive care unit, Pediatrics, 114, 1620, 10.1542/peds.2004-0447 Catlin, 2002, Creation of a neonatal end-of-life palliative care protocol, J Perinatol, 22, 184, 10.1038/sj.jp.7210687 Kaempf, 2006, Medical staff guidelines for periviability pregnancy counseling and medical treatment of extremely premature infants, Pediatrics, 117, 22, 10.1542/peds.2004-2547 Koh, 2007, Provision of taped conversations with neonatologists to mothers of babies in intensive care: randomised controlled trial, BMJ, 334, 28, 10.1136/bmj.39017.675648.BE