Factors influencing the care provided for periviable babies in Australia: a narrative review

Reproductive Health

Lynn Woodward²  Sarah Larkins²  Robin Ray²  Susan Ireland¹ 

[1] The neonatal unit, The Townsville Hospital, 100 Angus Smith Dve, Douglas 4814, Queensland, Australia;College of Medicine and Dentistry, James Cook University, Douglas 4814, Queensland, Australia

关键词: Australia;    Parental autonomy;    Ethics;    Decision-making;    Resuscitation;    Periviable;    Prematurity;   

Others  :  1234405
DOI  :  10.1186/s12978-015-0094-8

 received in 2015-04-19, accepted in 2015-10-31,  发布年份 2015

【 摘 要 】

Survival at extreme prematurity is becoming increasingly common. Neurodisability is an increasing risk with decreasing gestation. This review outlines the risks of extreme prematurity and the attitudes of health care providers and families in Australia of periviable babies. High quality data is difficult to find due to differing definitions and methods of assessment of disability. Meta-analyses of outcomes of prematurity published from 2008 to 2013, including babies born from 1990 onwards, suggest a severe disability rate of around 20 % at 22 to 26 weeks completed gestation, with moderate disability decreasing with increasing gestation. Studies show that Australian health care providers underestimate the survival and positive outcomes of these babies. The majority of Australian health care providers state that parental preference would determine the decision to offer care to babies at 23 weeks gestation, however, all had a threshold above which parental preference would be ignored in favour of resuscitation .This ranged from 22 to 27 completed weeks gestation. The few studies examining Australian parental involvement in resuscitation decisions, showed that the majority of parents felt that health professionals alone had made the decision to resuscitate their extremely preterm babies and the parents themselves did not wish to be the primary decision makers in withholding care. The babies progressed better than parents had expected following antenatal counselling. The attitudes of health care providers, experiences and opinions of parents seem to be at odds with the current move to increase parental decision making at the most extremes of gestation. Current Australian guidelines suggest parental decision making below 25 weeks gestation, and primarily clinician decision making over this gestation. The increased risks of prematurity and adverse outcomes for the North Queensland population is also explored. This population has a high proportion of Aboriginal and Torres Strait Islanders who have increased risks which are primarily linked to poor socioeconomic factors and are highest for the most remote residents. Attitudes towards delivery of care to these highest risk babies from health professionals and in the populations themselves have not been studied.

【 授权许可】

   
2015 Ireland et al.

【 图 表 】

Fig. 1.

【 参考文献 】

• [1]Costeloe K, Hennessy E, Gibson AT, Marlow N, Wilkinson AR. The EPICure study: outcomes to discharge from hospital for infants born at the threshold of viability. Pediatrics. 2000; 106(4):659-671.
• [2]Keir A, McPhee A, Wilkinson D. Beyond the borderline: Outcomes for inborn infants born at ≤ 500 grams. J Paediatr Child Health. 2014; 50(2):146-152.
• [3]Zayek MM, Trimm RF, Hamm CR, Peevy KJ, Benjamin JT, Eyal FG. The limit of viability: a single regional unit’s experience. Arch Ped & Adol Med. 2011; 165(2):126-133.
• [4]Chervenak FA, McCullough LB, Levene MI. An ethically justified, clinically comprehensive approach to peri-viability: Gynaecological, obstetric, perinatal and neonatal dimensions. J Obstet Gynaecol. 2007; 27(1):3-7.
• [5]Li ZZR, Hilder L, Sullivan EA. Australia’s mothers and babies 2011. In: Unit. ANPEaS, editor. Canberra, Australia Institute of Health and Welfare; 2013.
• [6]Kuschel CA, Kent A. Improved neonatal survival and outcomes at borderline viability brings increasing ethical dilemmas. J Paediatr Child Health. 2011; 47(9):585-589.
• [7]Kamath BD, Box TL, Simpson M, Hernandez JA. Infants born at the threshold of viability in relation to neonatal mortality: Colorado, 1991 to 2003. J Perinatol. 2008; 28(5):354-360.
• [8]Hosono S, Ohno T, Kimoto H, Shimizu M, Harada K. Morbidity and mortality of infants born at the threshold of viability: ten years’ experience in a single neonatal intensive care unit, 1991–2000. Pediatr Int. 2006; 48(1):33-39.
• [9]Wood NS, Costeloe K, Gibson AT, Hennessy EM, Marlow N, Wilkinson AR et al.. The EPICure study: associations and antecedents of neurological and developmental disability at 30 months of age following extremely preterm birth. Arch Dis Child Fetal Neonatal. 2005; 90(2):F134-F140.
• [10]Boland RA, Davis PG, Dawson JA, Doyle LW. Predicting death or major neurodevelopmental disability in extremely preterm infants born in Australia. Arch Dis Child-Fetal Neonatal. 2013; 98(3):F201-F204.
• [11]Anderson PJ, Doyle LW, editors. Cognitive and educational deficits in children born extremely preterm. Semin Perinatol. New York: Elsevier, 2008.
• [12]Saigal S, Doyle LW. An overview of mortality and sequelae of preterm birth from infancy to adulthood. Lancet. 2008; 371(9608):261-269.
• [13]Moore GP, Lemyre B, Barrowman N, Daboval T. Neurodevelopmental outcomes at 4 to 8 years of children born at 22 to 25 weeks’ gestational age: a meta-analysis. JAMA Pediatrics. 2013; 167(10):967-974.
• [14]Crowther CA, Hiller JE, Doyle LW, Haslam RR. Australasian Collaborative Trial of Magnesium Sulphate Collaborative G. Effect of magnesium sulfate given for neuroprotection before preterm birth: a randomized controlled trial. JAMA. 2003; 290(20):2669-2676.
• [15]Deshpande G, Rao S, Patole S. Probiotics for prevention of necrotising enterocolitis in preterm neonates with very low birthweight: a systematic review of randomised controlled trials. Lancet. 2007; 369(9573):1614-1620.
• [16]McHaffie H. Crucial decisions at the beginning of life: parents’ experiences of treatment withdrawal from infants: Radcliffe Pub; 2001.
• [17]Obeidat HM, Bond EA, Callister LC. The parental experience of having an infant in the newborn intensive care unit. J Perinat Educ. 2009; 18(3):23-29.
• [18]Wood NS, Marlow N, Costeloe K, Gibson AT, Wilkinson AR. Neurologic and developmental disability after extremely preterm birth. EPICure Study Group. NEJM. 2000; 343(6):378-384.
• [19]Hack M, Taylor HG, Drotar D, Schluchter M, Cartar L, Wilson-Costello D et al.. Poor predictive validity of the Bayley Scales of Infant Development for cognitive function of extremely low birth weight children at school age. Pediatrics. 2005; 116(2):333-341.
• [20]Marlow N, Wolke D, Bracewell MA, Samara M. Neurologic and developmental disability at six years of age after extremely preterm birth. NEJM. 2005; 352(1):9-19.
• [21]Doyle LW. Evaluation of neonatal intensive care for extremely low birth weight infants in Victoria over two decades: I. Effectiveness. Pediatrics. 2004; 113(3):505-509.
• [22]Farooqi A, Hägglöf B, Sedin G, Gothefors L, Serenius F. Chronic conditions, functional limitations, and special health care needs in 10-to 12-year-old children born at 23 to 25 weeks’ gestation in the 1990s: a Swedish national prospective follow-up study. Pediatrics. 2006; 118(5):e1466-e1477.
• [23]Buttner PMR. Epidemiology. 1st ed. Oxford University Press, Victoria; 2011.
• [24]Simeoni U, Vendemmia M, Rizzotti A, Gamerre M. Ethical dilemmas in extreme prematurity: Recent answers; more questions. Eur J Obstet Gynecol Reproduc Biol. 2004; 117:S33-S36.
• [25]Ross LF. The moral status of the newborn and its implications for medical decision making. Theor Med Bioeth. 2007; 28(5):349-355.
• [26]Partridge JC, Martinez AM, Nishida H, Boo N-Y, Tan KW, Yeung C-Y et al.. International comparison of care for very low birth weight infants: parents’ perceptions of counseling and decision-making. Pediatrics. 2005; 116(2):e263-e271.
• [27]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(1):e193-e198.
• [28]Lui K, Bajuk B, Foster K, Gaston A, Kent A, Sinn J et al.. Perinatal care at the borderlines of viability: a consensus statement based on a NSW and ACT consensus workshop. Med J Aust. 2006; 185(9):495.
• [29]Queensland clinical guidelines. Perinatal care at the threshold of viability. Queensland Health, Queensland; 2014.
• [30]Guinsburg R. Branco de Almeida MF, Dos Santos Rodrigues Sadeck L, Marba ST, Suppo de Souza Rugolo LM, Luz JH, et al. Proactive management of extreme prematurity: disagreement between obstetricians and neonatologists. J Perinatol. 2012; 32(12):913-919.
• [31]Garel M, Seguret S, Kaminski M, Cuttini M. Ethical decision-making for extremely preterm deliveries: results of a qualitative survey among obstetricians and midwives. J Matern Fetal Neonatal Med. 2004; 15(6):394-399.
• [32]Kavanaugh K, Moro TT, Savage TA. How nurses assist parents regarding life support decisions for extremely premature infants. JOGNN. 2010; 39(2):147-158.
• [33]Grobman WA, Kavanaugh K, Moro T, DeRegnier RA, Savage T. Providing advice to parents for women at acutely high risk of periviable delivery. Obstet Gynecol. 2010; 115(5):904-909.
• [34]Roscigno CI, Savage TA, Kavanaugh K, Moro TT, Kilpatrick SJ, Strassner HT et al.. Divergent views of hope influencing communications between parents and hospital providers. Qual Health Res. 2012; 22(9):1232-1246.
• [35]Haward MF, Murphy RO, Lorenz JM. Message framing and perinatal decisions. Pediatrics. 2008; 122(1):109-118.
• [36]de Garis C, Kuhse H, Singer P, Yu VY. Attitudes of Australian neonatal paediatricians to the treatment of extremely preterm infants. Aust Paediatr J. 1987; 23(4):223-226.
• [37]Munro M, Yu VYH, Partridge JC, Martinez AM. Antenatal counselling, resuscitation practices and attitudes among Australian neonatologists towards life support in extreme prematurity. ANZJOG. 2001; 41(3):275-280.
• [38]Mulvey S, Partridge JC, Martinez AM, Yu VY, Wallace EM. The management of extremely premature infants and the perceptions of viability and parental counselling practices of Australian obstetricians. ANZJOG. 2001; 41(3):269-273.
• [39]Gooi A, Oei J, Lui K. Attitudes of Level II obstetricians towards the care of the extremely premature infant: a national survey. J Paediat Child. 2003; 39(6):451-455.
• [40]Oei J, Askie LM, Tobiansky R, Lui K. Attitudes of neonatal clinicians towards resuscitation of the extremely premature infant: an exploratory survey. J Paediatr Child Health. 2000; 36(4):357-362.
• [41]Yu V, Loke H, Bajuk B, Szymonowicz W, Orgill A, Astbury J. Prognosis for infants born at 23 to 28 weeks’ gestation. BMJ. 1986; 293(6556):1200.
• [42]Anspach RR. Prognostic conflict in life-and-death decisions: The organization as an ecology of knowledge. J Health Soc Behavior. 1987; 28(3):215-231.
• [43]Martinez AM, Partridge JC, Yu V, Wee Tan K, Yeung CY, Lu JH et al.. Physician counselling practices and decision-making for extremely preterm infants in the Pacific Rim. J Paediatr Child Health. 2005; 41(4):209-214.
• [44]Harrison H. The offer they can’t refuse: parents and perinatal treatment decisions. Semin Fetal Neonatal Med. 2008; 13(5):329-334.
• [45]Brinchmann BS, Forde R, Nortvedt P. What matters to the parents? A qualitative study of parents’ experiences with life-and-death decisions concerning their premature infants. Nurs Ethics. 2002; 9(4):388-404.
• [46]Wilkinson AR, Ahluwalia J, Cole A, Crawford D, Fyle J, Gordon A et al.. Management of babies born extremely preterm at less than 26 weeks of gestation: a framework for clinical practice at the time of birth. Arch Dis Child Fetal Neonatal. 2009; 94(1):2-5.
• [47]Baum N, Weidberg Z, Osher Y, Kohelet D. No longer pregnant, not yet a mother: giving birth prematurely to a very-low-birth-weight baby. Qual Health Res. 2012; 22(5):595-606.
• [48]Garel M, Dardennes M, Blondel B. Mothers’ psychological distress 1 year after very preterm childbirth. Results of the EPIPAGE qualitative study. Child Care Health Dev. 2007; 33(2):137-143.
• [49]Alderson P, Hawthorne J, Killen M. Parents’ experiences of sharing neonatal information and decisions: Consent, cost and risk. Soc science med. 2006; 62(6):1319-1329.
• [50]Fenwick J, Barclay L, Schmied V. Struggling to mother: a consequence of inhibitive nursing interactions in the neonatal nursery. J Perinat Neonatal Nurs. 2001; 15(2):49-64.
• [51]Lou H, Pedersen BD, Hedegaard M. Questions never asked. Positive family outcomes of extremely premature childbirth. Qual Life Res. 2009; 18(5):567-573.
• [52]Wakely LT, Rae K, Cooper R. Stoic survival: the journey of parenting a premature infant in the bush. Rural Remote Health. 2010; 10(3):1-10.
• [53]Brinchmann BS. When the home becomes a prison: living with a severely disabled child. Nurs Ethics. 1999; 6(2):137-143.
• [54]Harrison H. Parental choice and neonatal resuscitation. Paediatr Perinat Epidemiol. 1996; 10(1):122.
• [55]McVeigh T. ‘Nathan was born at 23 weeks. If I’d known then what I do now, I’d have wanted him to die in my arms. The Guardian. 2011 20 March.
• [56]Neonatal database. 2014.The Townsville Hospital
• [57]Abdel-Latif M, Bajuk B, Oei J, Vincent T, Sutton L, Lui K. Does rural or urban residence make a difference to neonatal outcome in premature birth? A regional study in Australia. Arch Dis Child Fetal Neonat. 2006; 91(4):F251-F256.
• [58]Johnstone T. A multivariate approach to the disparity in perinatal outcomes between Indigenous and non-Indigenous women, Queensland. Health statistics branch. Queensland Health, Brisbane; 2014.
• [59]Kandasamy Y, Tanchi P, Edmonds L. Small for Gestational Age and Low Birth Weight Term Admissions to a Tertiary Perinatal Centre in Northern Queensland, Australia. J Immigr Minority Health. 2015;17:227-31.
• [60]Coory M. Can a mortality excess in remote areas of Australia be explained by Indigenous status? A case study using neonatal mortality in Queensland. Aust N Z J Public Health. 2003; 27(4):425-427.
• [61]Steenkamp M, Rumbold A, Barclay L, Kildea S. A population-based investigation into inequalities amongst Indigenous mothers and newborns by place of residence in the Northern Territory, Australia. BMC Pregnancy Childbirth. 2012; 12:44. BioMed Central Full Text
• [62]Lincoln M, Gallego G, Dew A, Bulkeley K, Veitch C, Bundy A et al.. Recruitment and retention of allied health professionals in the disability sector in rural and remote New South Wales, Australia. J Intellect Dev Disabil. 2014; 39(1):86-97.
• [63]D’Aprano AL, Carapetis JR, Andrews R. Trial of a developmental screening tool in remote Australian Aboriginal communities: A cautionary tale. J Paediatr Child Health. 2011; 47(1–2):12-17.
• [64]Dew A, Bulkeley K, Veitch C, Bundy A, Lincoln M, Brentnall J et al.. Carer and service providers’ experiences of individual funding models for children with a disability in rural and remote areas. Health Soc Care Community. 2013; 21(4):432-441.
• [65]Rosier KM, Myfanwy, Communities, Studies FCAAIoF. The relationship between transport and disadvantage in Australia.
• [66]Dew A, Bulkeley K, Veitch C, Bundy A, Gallego G, Lincoln M et al.. Addressing the barriers to accessing therapy services in rural and remote areas. Disabil Rehabil. 2013; 35(18):1564-1570.
• [67]Hopper B, Buckman M, Edwards M. Evaluation of satisfaction of parents with the use of videoconferencing for a pediatric genetic consultation. Twin Res Hum Genet. 2011; 14(4):343-346.
• [68]Smith AC, Bensink M, Armfield N, Stillman J, Caffery L. Telemedicine and rural health care applications. J Postgrad Med. 2005; 51(4):286.
• [69]Klassen AF, Lee SK, Raina P, Chan HW, Matthew D, Brabyn D. Health status and health-related quality of life in a population-based sample of neonatal intensive care unit graduates. Pediatrics. 2004; 113(3):594-600.