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Published in: BMC Pediatrics 1/2019

Open Access 01-12-2019 | Neonatology | Research article

Decision-making at the limit of viability: the Austrian neonatal choice context

Authors: Michal Stanak, Katharina Hawlik

Published in: BMC Pediatrics | Issue 1/2019

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Abstract

Background

We aimed to explore the shared decision-making context at the limit of viability (weeks 22–25 of gestation) through analyzing neonatologist’s communication strategies with parents and their possible impact on survival and neurodevelopmental impairment (NDI) outcomes.

Methods

A mixed methods approach was applied where a systematic literature search and in-depth semi-structured interviews with five heads of neonatology departments and one clinical ethicist from the Austrian context were integrated into a literature review. The aim was to identify decision practice models and the choice context specific to Austria.

Results

Professional biases, parental understanding, and the process of information giving were identified as aspects possibly influencing survival and NDI outcomes. Institutions create self-fulfilling prophecies by recommending intensive/palliative care based upon their institutional statistics, yet those vary considerably among high-income countries. Labelling an extremely preterm (EP) infant by the gestational week was shown to skew the estimates for survival while the process of information giving was shown to be subject to framing effect and other cognitive biases.

Conclusion

Communication strategies of choice options to parents may have an impact on the way parents decide and hence also on the outcomes of EP infants.
Literature
1.
go back to reference Glass HC, Costarino AT, Stayer SA, Brett CM, Cladis F, Davis PJ. Outcomes for Extremely Premature Infants. Anesth Analg. 2015;120(6):1337–51.CrossRef Glass HC, Costarino AT, Stayer SA, Brett CM, Cladis F, Davis PJ. Outcomes for Extremely Premature Infants. Anesth Analg. 2015;120(6):1337–51.CrossRef
3.
go back to reference Patel RM. Short- and long-term outcomes for extremely preterm infants. Am J Perinatol. 2016;33(3):318–28.CrossRef Patel RM. Short- and long-term outcomes for extremely preterm infants. Am J Perinatol. 2016;33(3):318–28.CrossRef
4.
go back to reference Jarjour IT. Neurodevelopmental outcome after extreme prematurity: a review of the literature. Pediatr Neurol. 2015;52(2):143–52.CrossRef Jarjour IT. Neurodevelopmental outcome after extreme prematurity: a review of the literature. Pediatr Neurol. 2015;52(2):143–52.CrossRef
5.
go back to reference Catlin A, et al. Palliative and end-of-life Care for Newborns and Infants. Adv Neonatal Care. 2015;15(4):239–40.CrossRef Catlin A, et al. Palliative and end-of-life Care for Newborns and Infants. Adv Neonatal Care. 2015;15(4):239–40.CrossRef
7.
go back to reference Zeitlin J, Szamotulska K, Drewniak N, Mohangoo A, Chalmers J, Sakkeus L, et al. Preterm birth time trends in Europe: a study of 19 countries. BJOG Int J Obstet Gynaecol. 2013;120(11):1356–65.CrossRef Zeitlin J, Szamotulska K, Drewniak N, Mohangoo A, Chalmers J, Sakkeus L, et al. Preterm birth time trends in Europe: a study of 19 countries. BJOG Int J Obstet Gynaecol. 2013;120(11):1356–65.CrossRef
8.
go back to reference Myrhaug HTBK, Hov L, Håvelsrud K, Reinar LM. Prognose for og oppfølging av ekstremt premature barn: En systematisk oversikt. Oslo: Norwegian Institute for Public Health; 2017. Myrhaug HTBK, Hov L, Håvelsrud K, Reinar LM. Prognose for og oppfølging av ekstremt premature barn: En systematisk oversikt. Oslo: Norwegian Institute for Public Health; 2017.
9.
go back to reference Sunstein CR. Nuding Health: Health Law and Behavioural economics,. Cohen G, Fernandez. Lynch H, Robertson CT, editors. Baltimore: John Hopkins University Press; 2016. Sunstein CR. Nuding Health: Health Law and Behavioural economics,. Cohen G, Fernandez. Lynch H, Robertson CT, editors. Baltimore: John Hopkins University Press; 2016.
10.
go back to reference Stanak M. Professional ethics: the case of neonatology. Med Health Care Philos.2019;22(2):231–8.CrossRef Stanak M. Professional ethics: the case of neonatology. Med Health Care Philos.2019;22(2):231–8.CrossRef
12.
go back to reference CT DMA. Principles of social research. London: Open University Press; 2014. CT DMA. Principles of social research. London: Open University Press; 2014.
13.
go back to reference Janvier A, Barrington K, Farlow B. Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology. Semin Perinatol. 2014;38(1):38–46.CrossRef Janvier A, Barrington K, Farlow B. Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology. Semin Perinatol. 2014;38(1):38–46.CrossRef
14.
go back to reference Guillén Ú, et al. Guidelines for the Management of Extremely Premature Deliveries: a systematic review. Pediatrics. 2015;136(2):343–50.CrossRef Guillén Ú, et al. Guidelines for the Management of Extremely Premature Deliveries: a systematic review. Pediatrics. 2015;136(2):343–50.CrossRef
15.
go back to reference Berger A, et al. Erstversorgung von Frühgeborenen an der Grenze der Lebensfähigkeit. Monatsschr Kinderheilkd. 2017;165:139–47.CrossRef Berger A, et al. Erstversorgung von Frühgeborenen an der Grenze der Lebensfähigkeit. Monatsschr Kinderheilkd. 2017;165:139–47.CrossRef
16.
go back to reference 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 Frühgeborene an der Grenze der Lebensfähigkeit 2014. 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 Frühgeborene an der Grenze der Lebensfähigkeit 2014.
17.
go back to reference Berger TM, et al. Perinatal care at the limit of viability between 22 and 26 completed weeks of gestation in Switzerland. Swiss Med Wkly. 2011;141:w13280. Berger TM, et al. Perinatal care at the limit of viability between 22 and 26 completed weeks of gestation in Switzerland. Swiss Med Wkly. 2011;141:w13280.
18.
go back to reference Lantos J, Meadow W. Variation in treatment of infants born at the borderline of viability. Pediatrics. 2009;123:1588–90.CrossRef Lantos J, Meadow W. Variation in treatment of infants born at the borderline of viability. Pediatrics. 2009;123:1588–90.CrossRef
19.
go back to reference Rysavy MALL, Bell EF, Das A, Hintz SR, Stoll BJ, et al. Between-hospital variation in treatment and outcomes in extremely preterm infants. N Engl J Med. 2015;372(19):1801–11.CrossRef Rysavy MALL, Bell EF, Das A, Hintz SR, Stoll BJ, et al. Between-hospital variation in treatment and outcomes in extremely preterm infants. N Engl J Med. 2015;372(19):1801–11.CrossRef
20.
go back to reference Haward MF, Murphy RO, Lorenz JM. Default options and neonatal resuscitation decisions. J Med Ethics. 2012;38(12):713–8.CrossRef Haward MF, Murphy RO, Lorenz JM. Default options and neonatal resuscitation decisions. J Med Ethics. 2012;38(12):713–8.CrossRef
21.
go back to reference Ireland S, Ray R, Larkins S, Woodward L. Factors influencing the care provided for periviable babies in Australia: a narrative review. Reprod Health. 2015;12:108.CrossRef Ireland S, Ray R, Larkins S, Woodward L. Factors influencing the care provided for periviable babies in Australia: a narrative review. Reprod Health. 2015;12:108.CrossRef
22.
go back to reference Boland RA, Davis PG, Dawson JA, Doyle LW. What are we telling the parents of extremely preterm babies? Aust NZ J Obstet Gynaecol. 2016;56:274–81.CrossRef Boland RA, Davis PG, Dawson JA, Doyle LW. What are we telling the parents of extremely preterm babies? Aust NZ J Obstet Gynaecol. 2016;56:274–81.CrossRef
23.
go back to reference Blanco F, Suresh G, Howard D, Soll RF. Ensuring accurate knowledge of prematurity outcomes for prenatal counseling. Pediatrics. 2005;115(4):e478–87.CrossRef Blanco F, Suresh G, Howard D, Soll RF. Ensuring accurate knowledge of prematurity outcomes for prenatal counseling. Pediatrics. 2005;115(4):e478–87.CrossRef
24.
go back to reference Chan KL, Kean LJ, Marlow N. Staff views on the management of the extremely pretern infant. Eur J Obstet Gynecol Reprod Biol. 2006;128:142–7.CrossRef Chan KL, Kean LJ, Marlow N. Staff views on the management of the extremely pretern infant. Eur J Obstet Gynecol Reprod Biol. 2006;128:142–7.CrossRef
25.
go back to reference Taittonen L, Korhonen PH, Palomaki O, Luukkaala T, Tammela O. Opinions of the counselling, care and outcome of extremely premature birth among healthcare professionals in Finland. Acta Paediatr. 2013;103:262–7.CrossRef Taittonen L, Korhonen PH, Palomaki O, Luukkaala T, Tammela O. Opinions of the counselling, care and outcome of extremely premature birth among healthcare professionals in Finland. Acta Paediatr. 2013;103:262–7.CrossRef
26.
go back to reference Tucker Edmonds B, McKenzie F, Farrow V, Raglan G, Schulkin J. A national survey of obstetricians’ attitudes toward and practice of periviable intervention. J Perinatol. 2015;35(5):338–43.CrossRef Tucker Edmonds B, McKenzie F, Farrow V, Raglan G, Schulkin J. A national survey of obstetricians’ attitudes toward and practice of periviable intervention. J Perinatol. 2015;35(5):338–43.CrossRef
27.
go back to reference Brett JM, et al. Clinical assessment of extremely premature infants in the delivery room is a poor predictor of survival. Pediatrics. 2010;125(3):e5559–e564. Brett JM, et al. Clinical assessment of extremely premature infants in the delivery room is a poor predictor of survival. Pediatrics. 2010;125(3):e5559–e564.
28.
go back to reference Dempsey EM, Barrington KJ. Diagnostic criteria and therapeutic interventions for the hypotensive very low birth weight infant. J Perinatol. 2006;26(11):677–81.CrossRef Dempsey EM, Barrington KJ. Diagnostic criteria and therapeutic interventions for the hypotensive very low birth weight infant. J Perinatol. 2006;26(11):677–81.CrossRef
29.
go back to reference Kett JC. Prenatal consultation for extremely preterm neonates: ethical pitfalls and proposed solutions. J Clin Ethics. 2015;26(3):241–9.PubMed Kett JC. Prenatal consultation for extremely preterm neonates: ethical pitfalls and proposed solutions. J Clin Ethics. 2015;26(3):241–9.PubMed
30.
go back to reference Doucette S, Lemyre B, Daboval T, Dunn S, Akiki S, Barrowman N, et al. Effect of an educational presentation about extremely preterm infants on knowledge and attitudes of Health care providers. Am J Perinatol. 2017;34(10):982–9.CrossRef Doucette S, Lemyre B, Daboval T, Dunn S, Akiki S, Barrowman N, et al. Effect of an educational presentation about extremely preterm infants on knowledge and attitudes of Health care providers. Am J Perinatol. 2017;34(10):982–9.CrossRef
31.
go back to reference Wallner J. Careful planning of the decision-making process in neonatology: ethical orientation. Z Geburtsh Neonatol. 2009;213:147–54.CrossRef Wallner J. Careful planning of the decision-making process in neonatology: ethical orientation. Z Geburtsh Neonatol. 2009;213:147–54.CrossRef
32.
go back to reference Batton DG. Committee on F, newborn. Clinical report--antenatal counseling regarding resuscitation at an extremely low gestational age. Pediatrics. 2009;124(1):422–7.CrossRef Batton DG. Committee on F, newborn. Clinical report--antenatal counseling regarding resuscitation at an extremely low gestational age. Pediatrics. 2009;124(1):422–7.CrossRef
33.
go back to reference 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):583–8.CrossRef 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):583–8.CrossRef
34.
go back to reference Gallagher K, Martin J, Keller M, Marlow N. European variation in decision-making and parental involvement during preterm birth. Arch Dis Child Fetal Neonatal Ed. 2014;99(3):F245–9.CrossRef Gallagher K, Martin J, Keller M, Marlow N. European variation in decision-making and parental involvement during preterm birth. Arch Dis Child Fetal Neonatal Ed. 2014;99(3):F245–9.CrossRef
35.
go back to reference Coons SJ, Rao S, Keininger DL, Hays RD. A comparative review of generic quality-of-life instruments. PharmacoEconomics. 2000;17(1):13–35.CrossRef Coons SJ, Rao S, Keininger DL, Hays RD. A comparative review of generic quality-of-life instruments. PharmacoEconomics. 2000;17(1):13–35.CrossRef
36.
go back to reference Boss RD, Kinsman HI, Donohue PK. Health-related quality of life for infants in the neonatal intensive care unit. J Perinatol. 2012;32:901.CrossRef Boss RD, Kinsman HI, Donohue PK. Health-related quality of life for infants in the neonatal intensive care unit. J Perinatol. 2012;32:901.CrossRef
37.
go back to reference Hoffman L, Marquis J, Poston D, Summers JA, Turnbull A. Assessing family outcomes: psychometric evaluation of the beach center family quality of life scale. J Marriage Fam. 2006;68(4):1069–83.CrossRef Hoffman L, Marquis J, Poston D, Summers JA, Turnbull A. Assessing family outcomes: psychometric evaluation of the beach center family quality of life scale. J Marriage Fam. 2006;68(4):1069–83.CrossRef
38.
go back to reference Keenan HT, Doron MW, Seyda BA. Comparison of mothers’ and counselors’ perceptions of predelivery counseling for extremely premature infants. Pediatrics. 2005;116(1):104–11.CrossRef Keenan HT, Doron MW, Seyda BA. Comparison of mothers’ and counselors’ perceptions of predelivery counseling for extremely premature infants. Pediatrics. 2005;116(1):104–11.CrossRef
39.
go back to reference Haward MF, Murphy RO, Lorenz JM. Message framing and perinatal decisions. Pediatrics. 2008;122(1):109–18.CrossRef Haward MF, Murphy RO, Lorenz JM. Message framing and perinatal decisions. Pediatrics. 2008;122(1):109–18.CrossRef
40.
go back to reference Haward MF, John LK, Lorenz JM, Fischoff B. Effects of description of options on perantal perinatal decision-making. Pediatrics. 2012;129(5):891–901.CrossRef Haward MF, John LK, Lorenz JM, Fischoff B. Effects of description of options on perantal perinatal decision-making. Pediatrics. 2012;129(5):891–901.CrossRef
41.
go back to reference Halpern D. Inside the nudge unit. Lonson: Penguin; 2015. Halpern D. Inside the nudge unit. Lonson: Penguin; 2015.
42.
go back to reference Berger TM. Guidelines for the management of extremely preterm deliveries in the grey zone of viability between 23 and 24 weeks’ gestation vary widely in developed countries. Evid Based Med. 2015;20(6):227.CrossRef Berger TM. Guidelines for the management of extremely preterm deliveries in the grey zone of viability between 23 and 24 weeks’ gestation vary widely in developed countries. Evid Based Med. 2015;20(6):227.CrossRef
Metadata
Title
Decision-making at the limit of viability: the Austrian neonatal choice context
Authors
Michal Stanak
Katharina Hawlik
Publication date
01-12-2019
Publisher
BioMed Central
Keyword
Neonatology
Published in
BMC Pediatrics / Issue 1/2019
Electronic ISSN: 1471-2431
DOI
https://doi.org/10.1186/s12887-019-1569-5

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