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Z Geburtshilfe Neonatol 2015; 219(01): 12-19
DOI: 10.1055/s-0034-1395575
Leitlinien
© Georg Thieme Verlag KG Stuttgart · New York

Frühgeborene an der Grenze der Lebensfähigkeit

Gemeinsame Empfehlung der Deutschen Gesellschaft für Gynäkologie und Geburtshilfe, Deutschen Gesellschaft für Kinder- und Jugendmedizin, Deutschen Gesellschaft für Perinatale Medizin, Akademie für Ethik in der Medizin, Gesellschaft für Neonatologie und Pädiatrische Intensivmedizin unter Mitwirkung des Deutschen Hebammenverbandes und des Bundesverbandes „Das frühgeborene Kind“
C. Bührer
,
U. Felderhoff-Müser
,
A. Kribs
,
C. Roll
,
A. Völkner
,
U. Gembruch
,
K. Hecher
,
F. Kainer
,
R. F. Maier
,
K. Vetter
,
T. Krones
,
V. Lipp
,
S. Steppat
,
H.-J. Wirthl
Further Information

Publication History

Publication Date:
03 March 2015 (online)

Also available at
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Diese Empfehlung betrifft die vor, während und nach der Geburt hinsichtlich sinnvoller kurativer und palliativer Therapieziele bei Frühgeborenen an der Grenze der Lebensfähigkeit zu treffenden Entscheidungen. Sie richtet sich an alle Berufsgruppen, die Schwangere vor und während der Geburt, Neugeborene und deren Eltern betreuen. Sie kann auch betroffenen Angehörigen als Hilfestellung dienen.

 

  • Literatur

  • 1 UN-Kinderrechtskonvention . Übereinkommen über die Rechte des Kindes. BGBl 1992; II: 121-144
    PubMedGoogle Scholar
  • 2 Grundgesetz für die Bundesrepublik Deutschland . Art. 1. BGBl 1949; I: 1
    PubMedGoogle Scholar
  • 3 Grundgesetz für die Bundesrepublik Deutschland . Art. 2. BGBl 1949; I: 1
    PubMedGoogle Scholar
  • 4 Bundesärztekammer . Grundsätze der Bundesärztekammer zur ärztlichen Sterbebegleitung. Deutsches Ärzteblatt 2011; 108: A346-A348
    PubMedGoogle Scholar
  • 5 Lipp V, Brauer D. Behandlungsbegrenzung und „futility“ aus rechtlicher Sicht. Z Palliativmed 2013; 14: 121-126
    Google Scholar
  • 6 Bürgerliches Gesetzbuch . § 630d Abs. 1 S. 1 und 2; eingefügt durch das Gesetz zur Verbesserung der Rechte von Patientinnen und Patienten vom 20. Februar 2013. BGBl 2013; I: 277
    PubMedGoogle Scholar
  • 7 Grundgesetz für die Bundesrepublik Deutschland . Art. 6. BGBl 1949; I: 2
    PubMedGoogle Scholar
  • 8 Bürgerliches Gesetzbuch . Gesetz zur Erleichterung familiengerichtlicher Maßnahmen bei Gefährdung des Kindeswohls. BGBl 2008; I: 1188
    PubMedGoogle Scholar
  • 9 Schneiderman LJ, Jecker NS, Jonsen AR. Medical futility: its meaning and ethical implications. Ann Intern Med 1990; 112: 949-954
    CrossrefPubMedGoogle Scholar
  • 10 Brody BA, Halevy A. Is futility a futile concept?. J Med Philos 1995; 20: 123-144
    CrossrefPubMedGoogle Scholar
  • 11 Caplan AL. Odds and ends: trust and the debate over medical futility. Ann Intern Med 1996; 125: 688-689
    Google Scholar
  • 12 Schneiderman LJ. Defining Medical Futility and Improving Medical Care. J Bioeth Inq 2011; 8: 123-131
    Google Scholar
  • 13 Truog RD. Is it always wrong to perform futile CPR?. N Engl J Med 2010; 362: 477-479
    Google Scholar
  • 14 Elwyn G, O’Connor A, Stacey D et al. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. BMJ 2006; 333: 417
    CrossrefPubMedGoogle Scholar
  • 15 Stacey D, Bennett CL, Barry MJ et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2011; CD001431
    PubMedGoogle Scholar
  • 16 Vlemmix F, Warendorf JK, Rosman AN et al. Decision aids to improve informed decision-making in pregnancy care: a systematic review. BJOG 2013; 120: 257-266
    Google Scholar
  • 17 Alfaleh KM, Al Luwaimi E, Alkharfi TM et al. A decision aid for considering indomethacin prophylaxis vs. symptomatic treatment of PDA for extreme low birth weight infants. BMC Pediatr 2011; 11: 78
    Google Scholar
  • 18 Guillén U, Suh S, Munson D et al. Development and pretesting of a decision-aid to use when counseling parents facing imminent extreme premature delivery. J Pediatr 2012; 160: 382-387
    CrossrefPubMedGoogle Scholar
  • 19 Muthusamy AD, Leuthner S, Gaebler-Uhing C et al. Supplemental written information improves prenatal counseling: a randomized trial. Pediatrics 2012; 129: e1269-e1274
    Google Scholar
  • 20 Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med 1997; 44: 681-692
    CrossrefPubMedGoogle Scholar
  • 21 Charles CA, Whelan T, Gafni A et al. Shared treatment decision making: what does it mean to physicians?. J Clin Oncol 2003; 21: 932-936
    CrossrefPubMedGoogle Scholar
  • 22 Kaempf JW, Tomlinson MW, Campbell B et al. Counseling pregnant women who may deliver extremely premature infants: medical care guidelines, family choices, and neonatal outcomes. Pediatrics 2009; 123: 1509-1515
    CrossrefPubMedGoogle Scholar
  • 23 Österreichische Gesellschaft für Kinder- und Jugendheilkunde . Erstversorgung von Frühgeborenen an der Grenze der Lebensfähigkeit. Leitlinie der Arbeitsgruppe Neonatologie und pädiatrische Intensivmedizin und der Arbeitsgruppe Ethik. Monatsschr Kinderheilk 2005; 153: 711-715
    Google Scholar
  • 24 Tyson JE, Parikh NA, Langer J et al. Intensive care for extreme prematurity – moving beyond gestational age. N Engl J Med 2008; 358: 1672-1681
    CrossrefPubMedGoogle Scholar
  • 25 Lee HC, Green C, Hintz SR et al. Prediction of death for extremely premature infants in a population-based cohort. Pediatrics 2010; 126: e644-e650
    CrossrefPubMedGoogle Scholar
  • 26 Boland RA, Davis PG, Dawson JA et al. Predicting death or major neurodevelopmental disability in extremely preterm infants born in Australia. Arch Dis Child Fetal Neonatal Ed 2013; 98: F201-F204
    Google Scholar
  • 27 Trotter A, Pohlandt F. Aktuelle Ergebnisqualität der Versorgung von Frühgeborenen<5 00 g Geburtsgewicht als Grundlage für eine Regionalisierung der Risikogeburten. Z Geburtsh Neonatol 2010; 214: 55-61
    Google Scholar
  • 28 http://www.nichd.nih.gov/about/org/der/branches/ppb/programs/epbo/Pages/epbo_case.aspx
    PubMed
  • 29 https://www.sqg.de/ergebnisse/leistungsbereiche/neonatologie.html
    PubMed
  • 30 Carlo WA, McDonald SA, Fanaroff AA et al. Association of antenatal corticosteroids with mortality and neurodevelopmental outcomes among infants born at 22 to 25 weeks’ gestation. JAMA 2011; 306: 2348-2358
    CrossrefPubMedGoogle Scholar
  • 31 Stichtenoth G, Demmert M, Bohnhorst B et al. Major contributors to hospital mortality in very-low-birth-weight infants: data of the birth year 2010 cohort of the German Neonatal Network. Klin Pädiatr 2012; 224: 276-281
    Article in Thieme ConnectPubMedGoogle Scholar
  • 32 Hüseman D, Metze B, Walch E et al. Laboratory markers of perinatal acidosis are poor predictors of neurodevelopmental impairment in very low birth weight infants. Early Hum Dev 2011; 87: 677-681
    Google Scholar
  • 33 Genzel-Boroviczény O, Hempelman J, Zoppelli L et al. Predictive value of the 1-min Apgar score for survival at 23–26 weeks gestational age. Acta Pædiatr 2010; 99: 1790-1794
    Google Scholar
  • 34 Singh J, Fanaroff J, Andrews B et al. Resuscitation in the „gray zone“ of viability: determining physician preferences and predicting infant outcomes. Pediatrics 2007; 120: 519-526
    CrossrefPubMedGoogle Scholar
  • 35 Manley BJ, Dawson JA, Kamlin CO et al. Clinical assessment of extremely premature infants in the delivery room is a poor predictor of survival. Pediatrics 2010; 125: e559-e564
    Google Scholar
  • 36 Zeitlin J, Mohangoo AD, Delnord M et al. The second European Perinatal Health Report: documenting changes over 6 years in the health of mothers and babies in Europe. J Epidemiol Community Health 2013; 67: 983-985
    CrossrefPubMedGoogle Scholar
  • 37 www.europeristat.com
    PubMed
  • 38 Fellman V, Hellström-Westas L, Norman M et al. One-year survival of extremely preterm infants after active perinatal care in Sweden. JAMA 2009; 301: 2225-2233
    CrossrefPubMedGoogle Scholar
  • 39 Itabashi K, Horiuchi T, Kusuda S et al. Mortality rates for extremely low birth weight infants born in Japan in 2005. Pediatrics 2009; 123: 445-450
    CrossrefPubMedGoogle Scholar
  • 40 Stoll BJ, Hansen NI, Bell EF et al. Neonatal outcomes of extremely preterm infants from the NICHD Neonatal Research Network. Pediatrics 2010; 126: 443-456
    CrossrefPubMedGoogle Scholar
  • 41 Costeloe KL, Hennessy EM, Haider S et al. Short term outcomes after extreme preterm birth in England: comparison of two birth cohorts in 1995 and 2006 (the EPICure studies). BMJ 2012; 345: e7976
    CrossrefPubMedGoogle Scholar
  • 42 de Waal CG, Weisglas-Kuperus N, van Goudoever JB et al. Mortality, neonatal morbidity and two year follow-up of extremely preterm infants born in The Netherlands in 2007. PLoS One 2012; 7: e41302.
    PubMedGoogle Scholar
  • 43 Herber-Jonat S, Schulze A, Kribs A et al. Survival and major neonatal complications in infants born between 22 0/7 and 24 6/7 weeks of gestation (1999–2003). Am J Obstet Gynecol 2006; 195: 16-22
    CrossrefPubMedGoogle Scholar
  • 44 Kutz P, Horsch S, Kühn L et al. Single-centre vs. population-based outcome data of extremely preterm infants at the limits of viability. Acta Pædiatr 2009; 98: 1451-1455
    CrossrefPubMedGoogle Scholar
  • 45 Holtrop P, Swails T, Riggs T et al. Resuscitation of infants born at 22 weeks gestation: a 20-year retrospective. J Perinatol 2013; 33: 222-225
    CrossrefPubMedGoogle Scholar
  • 46 Moore T, Hennessy EM, Myles J et al. Neurological and developmental outcome in extremely preterm children born in England in 1995 and 2006: the EPICure studies. BMJ. 2012 345. e7961
    PubMedGoogle Scholar
  • 47 Serenius F, Källén K, Blennow M et al. Neurodevelopmental outcome in extremely preterm infants at 2.5 years after active perinatal care in Sweden. JAMA 2013; 309: 1810-1820
    CrossrefPubMedGoogle Scholar
  • 48 Ishii N, Kono Y, Yonemoto N et al. Outcomes of infants born at 22 and 23 weeks’ gestation. Pediatrics 2013; 132: 62-71
    CrossrefPubMedGoogle Scholar
  • 49 Andrews WW, Cliver SP, Biasini F et al. Early preterm birth: association between in utero exposure to acute inflammation and severe neurodevelopmental disability at 6 years of age. Am J Obstet Gynecol 2008; 198: 446.e1-446.e11
    PubMedGoogle Scholar
  • 50 Mercier CE, Dunn MS, Ferrelli KR et al. Neurodevelopmental outcome of extremely low birth weight infants from the Vermont Oxford network: 1998–2003. Neonatology 2009; 97: 329-338
    PubMedGoogle Scholar
  • 51 Doyle LW, Roberts G, Anderson PJ. Outcomes at age 2 years of infants<28 weeks’ gestational age born in Victoria in 2005. J Pediatr 2010; 156: 49e1-53e1
    PubMedGoogle Scholar
  • 52 Marlow N, Wolke D, Bracewell MA et al. Neurologic and developmental disability at six years of age after extremely preterm birth. N Engl J Med 2005; 352: 9-19
    CrossrefPubMedGoogle Scholar
  • 53 Gargus RA, Vohr BR, Tyson JE et al. Unimpaired outcomes for extremely low birth weight infants at 18 to 22 months. Pediatrics 2009; 124: 112-121
    CrossrefPubMedGoogle Scholar
  • 54 Rieger-Fackeldey E, Blank C, Dinger J et al. Growth, neurological and cognitive development in infants with a birthweight <501 g at age 5 years. Acta Pædiatr 2010; 99: 1350-1355
    CrossrefPubMedGoogle Scholar
  • 55 MacKay DF, Smith GC, Dobbie R et al. Gestational age at delivery and special educational need: retrospective cohort study of 407,503 schoolchildren. PLoS Med 2010; 7: e1000289
    CrossrefPubMedGoogle Scholar
  • 56 Steinmacher J, Pohlandt F, Bode H et al. Neurodevelopmental follow-up of very preterm infants after proactive treatment at a gestational age of>or=23 weeks. J Pediatr 2008; 152: 771-776
    CrossrefPubMedGoogle Scholar
  • 57 Goddeeris JH, Saigal S, Boyle MH et al. Economic outcomes in young adulthood for extremely low birth weight survivors. Pediatrics 2010; 126: e1102-e1108
    CrossrefPubMedGoogle Scholar
  • 58 Hack M, Klein N. Young adult attainments of preterm infants. JAMA 2006; 295: 695-696
    CrossrefPubMedGoogle Scholar
  • 59 Saigal S, Doyle LW. An overview of mortality and sequelae of preterm birth from infancy to adulthood. Lancet 2008; 371: 261-269
    CrossrefPubMedGoogle Scholar
  • 60 Saigal S, Pinelli J, Streiner DL et al. Impact of extreme prematurity on family functioning and maternal health 20 years later. Pediatrics 2010; 126: e81-e88
    CrossrefPubMedGoogle Scholar
  • 61 Zlátohlavková B, Kytnarová J, Kuběna A et al. Five-year survival without major disability of extremely preterm infants born at 22–27 weeks’ gestation admitted to a NICU. Acta Pædiatr 2010; 99: 1618-1623
    CrossrefPubMedGoogle Scholar
  • 62 Herber-Jonat S, Streiftau S, Knauss E et al. Long-term outcome at age 7–10 years after extreme prematurity – A prospective, two centre cohort study of children born before 25 completed weeks of gestation (1999–2003). J Matern Fetal Neonatal Med 2014; 27: 1620-1626
    CrossrefPubMedGoogle Scholar
  • 63 Pignotti MS, Donzelli G. Perinatal care at the threshold of viability: an international comparison of practical guidelines for the treatment of extremely preterm births. Pediatrics 2008; 121: e193-e198
    Google Scholar
  • 64 Kattwinkel J, Perlman JM, Aziz K et al. Part 15: neonatal resuscitation: 2010 American Heart Association Guidelines for Cardiopulmonary Resuscitation and Emergency Cardiovascular Care. Circulation 2010; 122: S909-S919
    Google Scholar
  • 65 Kattwinkel J, Perlman JM, Aziz K et al. Neonatal resuscitation: 2010 American Heart Association Guidelines for Cardiopulmonary Resuscitation and Emergency Cardiovascular Care. Pediatrics 2010; 126: e1400-e1413
    CrossrefPubMedGoogle Scholar
  • 66 Richmond S, Wyllie J. European Resuscitation Council Guidelines for Resuscitation 2010 Section 7. Resuscitation of babies at birth. Resuscitation 2010; 81: 1389-1399
    CrossrefPubMedGoogle Scholar
  • 67 Moriette G, Rameix S, Azria E et al. Naissances tres prematurées: dilemmes et propositions de prise en charge. Première partie: pronostic des naissances avant 28 semaines, identification d’une zone grise. Arch Pédiatr 2010; 17: 518-526
    Google Scholar
  • 68 Moriette G, Rameix S, Azria E et al. Naissances tres prematurées: dilemmes et propositions de prise en charge. Seconde partie: enjeux éthiques, principes de prise en charge et recommandations. Arch Pédiatr 2010; 17: 527-539
    Google Scholar
  • 69 de Laat MW, Wiegerinck MM, Walther FJ et al. Richtlijn ,Perinataal beleid bij extreme vroeggeboorte‘. Ned Tijdschr Geneeskd 2010; 154: A2701
    Google Scholar
  • 70 Berger TM, Bernet V, El Alama S et al. Perinatal care at the limit of viability between 22 and 26 completed weeks of gestation in Switzerland. 2011 revision of the Swiss recommendations. Swiss Med Wkly 2011; 141: w13280
    PubMedGoogle Scholar
  • 71 Pohlandt F. Frühgeburt an der Grenze der Lebensfähigkeit des Kindes. AMWF-Leitlinien-Register Nr. 024-019. Z Geburtsh Neonatol 2008; 212: 109-113
    Google Scholar
  • 72 Cuttini M, Nadai M, Kaminski M et al. End-of-life decisions in neonatal intensive care: physicians’ self-reported practices in seven European countries. EURONIC Study Group. Lancet 2000; 355: 2112-2118
    Google Scholar
  • 73 Brown SD, Donelan K, Martins Y et al. Differing attitudes toward fetal care by pediatric and maternal-fetal medicine specialists. Pediatrics 2012; 130: e1534-e1540
    Google Scholar
  • 74 Guinsburg R, Branco de Almeida MF, Dos Santos Rodrigues Sadeck L et al. Proactive management of extreme prematurity: disagreement between obstetricians and neonatologists. J Perinatol 2012; 32: 913-919
    Google Scholar
  • 75 Bauer K, Vetter K, Groneck P et al. Empfehlung für die strukturellen Voraussetzungen der perinatologischen Versorgung in Deutschland. Z Geburtsh Neonatol 2006; 201: 1-6
    Article in Thieme ConnectPubMedGoogle Scholar
  • 76 Mori R, Kusuda S, Fujimura M. Antenatal corticosteroids promote survival of extremely preterm infants born at 22 to 23 weeks of gestation. J Pediatr 2011; 159: 110e1–4e1
    PubMedGoogle Scholar
  • 77 Ochiai M, Kinjo T, Takahata Y et al. Survival and neurodevelopmental outcome of preterm infants born at 22-24 weeks of gestational age. Neonatology 2014; 105: 79-84
    Google Scholar
  • 78 Smith PB, Ambalavanan N, Li L et al. Approach to infants born at 22 to 24 weeks’ gestation: relationship to outcomes of more-mature infants. Pediatrics 2012; 129: e1508-e1516
    CrossrefPubMedGoogle Scholar
  • 79 Håkansson S, Farooqi A, Holmgren PA et al. Proactive management promotes outcome in extremely preterm infants: a population-based comparison of two perinatal management strategies. Pediatrics 2004; 114: 58-64
    CrossrefPubMedGoogle Scholar
  • 80 Bauer J, Hentschel R, Zahradnik H et al. Vaginal delivery and neonatal outcome in extremely-low-birth-weight infants below 26 weeks of gestational age. Am J Perinatol 2003; 20: 181-188
    Article in Thieme ConnectPubMedGoogle Scholar
  • 81 Barber CA, Sikes NC, Norton JD et al. Effects of mode of delivery on mortality and severe brain injury in extremely low birth weight infants in Arkansas. J Ark Med Soc 2007; 104: 63-66
    Google Scholar
  • 82 Deutsch A, Salihu HM, Lynch O et al. Cesarean delivery versus vaginal delivery: impact on survival and morbidity for the breech fetus at the threshold of viability. J Matern Fetal Neonatal Med 2011; 24: 713-717
    CrossrefPubMedGoogle Scholar
  • 83 Minguez-Milio JA, Alcazar JL, Auba M et al. Perinatal outcome and long-term follow-up of extremely low birth weight infants depending on the mode of delivery. J Matern Fetal Neonatal Med 2011; 24: 1235-1238
    CrossrefPubMedGoogle Scholar
  • 84 Caeymaex L, Speranza M, Vasilescu C et al. Living with a crucial decision: a qualitative study of parental narratives three years after the loss of their newborn in the NICU. PLoS One 2011; 6: e28633
    Google Scholar
  • 85 Orfali K, Gordon EJ. Autonomy gone awry: a cross-cultural study of parents’ experiences in neonatal intensive care units. Theor Med Bioeth 2004; 25: 329-365
    Google Scholar
  • 86 Griswold KJ, Fanaroff JM. An evidence-based overview of prenatal consultation with a focus on infants born at the limits of viability. Pediatrics 2010; 125: e931-e937
    Google Scholar
  • 87 Baumann-Hölzle R, Maffezzoni M, Bucher HU. A framework for ethical decision making in neonatal intensive care. Acta Pædiatr 2005; 94: 1777-1783
    Google Scholar
  • 88 Schulz-Baldes A, Hüseman D, Loui A et al. Neonatal end-of-life practice in a German perinatal centre. Acta Pædiatr 2007; 96: 681-687
    Google Scholar
  • 89 Garten L, von der Hude K, Rösner B et al. Familienzentrierte Sterbe- und individuelle Trauerbegleitung an einem Perinatalzentrum. Z Geburtsh Neonatol 2013; 217: 95-102
    Article in Thieme ConnectPubMedGoogle Scholar