Skip to main content
Top
Published in: BMC Pediatrics 1/2018

Open Access 01-12-2018 | Research article

Decision-making at the limit of viability: differing perceptions and opinions between neonatal physicians and nurses

Authors: Hans Ulrich Bucher, Sabine D. Klein, Manya J. Hendriks, Ruth Baumann-Hölzle, Thomas M. Berger, Jürg C. Streuli, Jean-Claude Fauchère, on behalf of the Swiss Neonatal End-of-Life Study Group

Published in: BMC Pediatrics | Issue 1/2018

Login to get access

Abstract

Background

In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits of viability. Shared decision-making regarding these fragile infants between health care professionals and parents has become the preferred model today. However, there is an ongoing ethical debate on how decisions regarding life-sustaining treatment should be reached and who should have the final word when health care professionals and parents do not agree. We designed a survey among neonatologists and neonatal nurses to analyze practices, difficulties and parental involvement in end-of-life decisions for extremely preterm infants.

Methods

All 552 physicians and nurses with at least 12 months work experience in level III neonatal intensive care units (NICU) in Switzerland were invited to participate in an online survey with 50 questions. Differences between neonatologists and NICU nurses and between language regions were explored.

Results

Ninety six of 121 (79%) physicians and 302 of 431(70%) nurses completed the online questionnaire. The following difficulties with end-of-life decision-making were reported more frequently by nurses than physicians: insufficient time for decision-making, legal constraints and lack of consistent unit policies. Nurses also mentioned a lack of solidarity in our society and shortage of services for disabled more often than physicians. In the context of limiting intensive care in selected circumstances, nurses considered withholding tube feedings and respiratory support less acceptable than physicians. Nurses were more reluctant to give parents full authority to decide on the course of action for their infant. In contrast to professional category (nurse or physician), language region, professional experience and religion had little influence if any on the answers given.

Conclusions

Physicians and nurses differ in many aspects of how and by whom end-of-life decisions should be made in extremely preterm infants. The divergencies between nurses and physicians may be due to differences in ethics education, varying focus in patient care and direct exposure to the patients. Acknowledging these differences is important to avoid potential conflicts within the neonatal team but also with parents in the process of end-of-life decision-making in preterm infants born at the limits of viability.
Appendix
Available only for authorised users
Literature
1.
go back to reference Marlow N. Keeping up with outcomes for infants born at extremely low gestational ages. JAMA Pediatr. 2015;169(3):3–4.CrossRef Marlow N. Keeping up with outcomes for infants born at extremely low gestational ages. JAMA Pediatr. 2015;169(3):3–4.CrossRef
2.
go back to reference Fanaroff JM, Hascoet JM, Hansen TWR, Levene M, Norman M, Papageorgiou A, Shinwell E, van de Bor M, Stevenson DK. Ipc: the ethics and practice of neonatal resuscitation at the limits of viability: an international perspective. Acta Paediatr. 2014;103(7):701–8.PubMed Fanaroff JM, Hascoet JM, Hansen TWR, Levene M, Norman M, Papageorgiou A, Shinwell E, van de Bor M, Stevenson DK. Ipc: the ethics and practice of neonatal resuscitation at the limits of viability: an international perspective. Acta Paediatr. 2014;103(7):701–8.PubMed
3.
4.
go back to reference Hellmann J, Knighton R, Lee SK, Shah PS. Neonatal deaths: prospective exploration of the causes and process of end-of-life decisions. Arch Dis Child Fetal Neonatal Ed. 2016;101(2):F102–7.CrossRef Hellmann J, Knighton R, Lee SK, Shah PS. Neonatal deaths: prospective exploration of the causes and process of end-of-life decisions. Arch Dis Child Fetal Neonatal Ed. 2016;101(2):F102–7.CrossRef
5.
go back to reference Verhagen AA, Dorscheidt JH, Engels B, Hubben JH, Sauer PJ. End-of-life decisions in Dutch neonatal intensive care units. Archives of pediatrics & adolescent medicine. 2009;163(10):895–901.CrossRef Verhagen AA, Dorscheidt JH, Engels B, Hubben JH, Sauer PJ. End-of-life decisions in Dutch neonatal intensive care units. Archives of pediatrics & adolescent medicine. 2009;163(10):895–901.CrossRef
7.
go back to reference Pham-Nguyen AT, Ho LY. Review on neonatal end-of-life decision-making : medical authority or parental autonomy? Proceedings of Singapore Healthcare. 2013;22:140–5.CrossRef Pham-Nguyen AT, Ho LY. Review on neonatal end-of-life decision-making : medical authority or parental autonomy? Proceedings of Singapore Healthcare. 2013;22:140–5.CrossRef
8.
go back to reference De Leeuw R, Cuttini M, Nadai M, Berbik I, Hansen G, Kucinskas A, Lenoir S, Levin A, Persson J, Rebagliato M, et al. Treatment choices for extremely preterm infants: an international perspective. J Pediatr. 2000;137(5):608–16.CrossRef De Leeuw R, Cuttini M, Nadai M, Berbik I, Hansen G, Kucinskas A, Lenoir S, Levin A, Persson J, Rebagliato M, et al. Treatment choices for extremely preterm infants: an international perspective. J Pediatr. 2000;137(5):608–16.CrossRef
9.
go back to reference Geurtzen R, Draaisma J, Hermens R, Scheepers H, Woiski M, van Heijst A, Hogeveen M. Perinatal practice in extreme premature delivery: variation in Dutch physicians’ preferences despite guideline. Eur J Pediatr. 2016;175(8):1039–46.CrossRef Geurtzen R, Draaisma J, Hermens R, Scheepers H, Woiski M, van Heijst A, Hogeveen M. Perinatal practice in extreme premature delivery: variation in Dutch physicians’ preferences despite guideline. Eur J Pediatr. 2016;175(8):1039–46.CrossRef
10.
go back to reference Verhagen E, Janvier A. How babies die and why this is important to clinicians, researchers and parents. In: Verhagen E, Janvier A, editors. Ethical Dilemma’s for Critically Ill Babies. Volume 65. Dordrecht: Springer; 2016. Verhagen E, Janvier A. How babies die and why this is important to clinicians, researchers and parents. In: Verhagen E, Janvier A, editors. Ethical Dilemma’s for Critically Ill Babies. Volume 65. Dordrecht: Springer; 2016.
11.
go back to reference Cuttini M, Nadai M, Kaminski M, Hansen G, de Leeuw R, Lenoir S, Persson J, Rebagliato M, Reid M, de Vonderweid U, et al. End-of-life decisions in neonatal intensive care: physicians’ self-reported practices in seven European countries. Lancet. 2000;355(9221):2112–8.CrossRef Cuttini M, Nadai M, Kaminski M, Hansen G, de Leeuw R, Lenoir S, Persson J, Rebagliato M, Reid M, de Vonderweid U, et al. End-of-life decisions in neonatal intensive care: physicians’ self-reported practices in seven European countries. Lancet. 2000;355(9221):2112–8.CrossRef
12.
go back to reference Hendriks MJ, Klein SD, Bucher HU, Baumann-Holzle R, Streuli JC, Fauchere JC. Attitudes towards decisions about extremely premature infants differed between Swiss linguistic regions in population-based study. Acta Paediatr. 2017;106(3):423–9.CrossRef Hendriks MJ, Klein SD, Bucher HU, Baumann-Holzle R, Streuli JC, Fauchere JC. Attitudes towards decisions about extremely premature infants differed between Swiss linguistic regions in population-based study. Acta Paediatr. 2017;106(3):423–9.CrossRef
13.
go back to reference Kopetsch T. The migration of doctors to and from Germany. Journal of Public Health. 2009;17(1):33–9.CrossRef Kopetsch T. The migration of doctors to and from Germany. Journal of Public Health. 2009;17(1):33–9.CrossRef
14.
go back to reference Biller-Andorno N, Zeltner T. Individual responsibility and community solidarity: the Swiss health care system. N Engl J Med. 2015;373(23):2193–7.CrossRef Biller-Andorno N, Zeltner T. Individual responsibility and community solidarity: the Swiss health care system. N Engl J Med. 2015;373(23):2193–7.CrossRef
15.
go back to reference Hendriks MJ, Bucher HU, Klein SD, Streuli JC, Baumann-Holzle R, Fauchere JC. Exploring societal solidarity in the context of extreme prematurity. Swiss Med Wkly. 2017;147:w14418.PubMed Hendriks MJ, Bucher HU, Klein SD, Streuli JC, Baumann-Holzle R, Fauchere JC. Exploring societal solidarity in the context of extreme prematurity. Swiss Med Wkly. 2017;147:w14418.PubMed
16.
go back to reference Berger TM, Bernet V, El Alama S, Fauchere JC, Hosli I, Irion O, Kind C, Latal B, Nelle M, Pfister RE, 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;141:1–13. Berger TM, Bernet V, El Alama S, Fauchere JC, Hosli I, Irion O, Kind C, Latal B, Nelle M, Pfister RE, 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;141:1–13.
17.
go back to reference Légaré F, Witteman HO. Shared decision making: examining key elements and barriers to adoption into routine clinical practice. Health affairs (Project Hope). 2013;32(2):276–84.CrossRef Légaré F, Witteman HO. Shared decision making: examining key elements and barriers to adoption into routine clinical practice. Health affairs (Project Hope). 2013;32(2):276–84.CrossRef
18.
go back to reference Zimmermann K, Bergstraesser E, Engberg S, Ramelet A-S, Marfurt-Russenberger K, Von der Weid N, Grandjean C, Fahrni-Nater P, Cignacco E. When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child’s end-of life care. BMC Palliative Care. 2016;15(1):30.CrossRef Zimmermann K, Bergstraesser E, Engberg S, Ramelet A-S, Marfurt-Russenberger K, Von der Weid N, Grandjean C, Fahrni-Nater P, Cignacco E. When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child’s end-of life care. BMC Palliative Care. 2016;15(1):30.CrossRef
20.
go back to reference Cornuz J, Kuenzi B, Krones T. Shared decision making development in Switzerland: room for improvement! Zeitschrift für Evidenz. Fortbildung und Qualität im Gesundheitswesen. 2011;105(4):296–9.CrossRef Cornuz J, Kuenzi B, Krones T. Shared decision making development in Switzerland: room for improvement! Zeitschrift für Evidenz. Fortbildung und Qualität im Gesundheitswesen. 2011;105(4):296–9.CrossRef
21.
go back to reference Ferrand E, Lemaire F, Regnier B, Kuteifan K, Badet M, Asfar P, Jaber S, Chagnon JL, Renault A, Robert R, et al. Discrepancies between perceptions by physicians and nursing staff of intensive care unit end-of-life decisions. Am J Respir Crit Care Med. 2003;167(10):1310–5.CrossRef Ferrand E, Lemaire F, Regnier B, Kuteifan K, Badet M, Asfar P, Jaber S, Chagnon JL, Renault A, Robert R, et al. Discrepancies between perceptions by physicians and nursing staff of intensive care unit end-of-life decisions. Am J Respir Crit Care Med. 2003;167(10):1310–5.CrossRef
22.
go back to reference Gallagher K, Marlow N, Edgley A, Porock D. The attitudes of neonatal nurses towards extremely preterm infants. J Adv Nurs. 2012;68:1768–79.CrossRef Gallagher K, Marlow N, Edgley A, Porock D. The attitudes of neonatal nurses towards extremely preterm infants. J Adv Nurs. 2012;68:1768–79.CrossRef
23.
go back to reference Inghelbrecht E, Bilsen J, Mortier F, Deliens L. Nurses’ attitudes towards end-of-life decisions in medical practice: a nationwide study in Flanders, Belgium. Palliat Med. 2009;23:649–58.CrossRef Inghelbrecht E, Bilsen J, Mortier F, Deliens L. Nurses’ attitudes towards end-of-life decisions in medical practice: a nationwide study in Flanders, Belgium. Palliat Med. 2009;23:649–58.CrossRef
24.
go back to reference Malloy DC, Hadjistavropoulos T, McCarthy EF, Evans RJ, Zakus DH, Park I, Lee Y, Williams J. Culture and organizational climate: nurses’ insights into their relationship with physicians. Nurs Ethics. 2009;16(6):719–33.CrossRef Malloy DC, Hadjistavropoulos T, McCarthy EF, Evans RJ, Zakus DH, Park I, Lee Y, Williams J. Culture and organizational climate: nurses’ insights into their relationship with physicians. Nurs Ethics. 2009;16(6):719–33.CrossRef
25.
go back to reference Baumann-Holzle R, Maffezzoni M, Bucher HU. A framework for ethical decision making in neonatal intensive care. Acta Paediatr. 2005;94(12):1777–83.CrossRef Baumann-Holzle R, Maffezzoni M, Bucher HU. A framework for ethical decision making in neonatal intensive care. Acta Paediatr. 2005;94(12):1777–83.CrossRef
26.
go back to reference Arlettaz R, Mieth D, Bucher H-U, Duc G, Fauchère J-C. End-of-life decisions in delivery room and neonatal intensive care unit. Acta Paediatr (Oslo, Norway: 1992. 2005;94:1626–31.CrossRef Arlettaz R, Mieth D, Bucher H-U, Duc G, Fauchère J-C. End-of-life decisions in delivery room and neonatal intensive care unit. Acta Paediatr (Oslo, Norway: 1992. 2005;94:1626–31.CrossRef
27.
go back to reference Boland RA, Davis PG, Dawson JA, Doyle LW. What are we telling the parents of extremely preterm babies? Aust N Z J Obstet Gynaecol. 2016;56(3):274–81.CrossRef Boland RA, Davis PG, Dawson JA, Doyle LW. What are we telling the parents of extremely preterm babies? Aust N Z J Obstet Gynaecol. 2016;56(3):274–81.CrossRef
28.
go back to reference Bry K, Bry M, Hentz E, Karlsson HL, Kyllönen H, Lundkvist M, Wigert H. Communication skills training enhances nurses’ ability to respond with empathy to parents’ emotions in a neonatal intensive care unit. Acta Paediatr. 2016;105(4):397–406. doi:https://doi.org/10.1111/apa.13295.CrossRef Bry K, Bry M, Hentz E, Karlsson HL, Kyllönen H, Lundkvist M, Wigert H. Communication skills training enhances nurses’ ability to respond with empathy to parents’ emotions in a neonatal intensive care unit. Acta Paediatr. 2016;105(4):397–406. doi:https://​doi.​org/​10.​1111/​apa.​13295.CrossRef
29.
go back to reference Haapa Hybinette H. Comparing experiences of neonatal information provision between parents of extremeley premature babies and neonatal nurses. Stockholm: Stockholm University; 2015. Haapa Hybinette H. Comparing experiences of neonatal information provision between parents of extremeley premature babies and neonatal nurses. Stockholm: Stockholm University; 2015.
30.
go back to reference de Vos MA, van der Heide A, Maurice-Stam H, Brouwer OF, Plötz FB, AYN S-v M, Willems DL, HSA H, Bos AP. The process of end-of-life decision-making in pediatrics: a national survey in the Netherlands. Pediatrics. 2011;127:e1004–12.CrossRef de Vos MA, van der Heide A, Maurice-Stam H, Brouwer OF, Plötz FB, AYN S-v M, Willems DL, HSA H, Bos AP. The process of end-of-life decision-making in pediatrics: a national survey in the Netherlands. Pediatrics. 2011;127:e1004–12.CrossRef
31.
go back to reference Aladangady N, Shaw C, Gallagher K, Stokoe E, Marlow N. Short-term outcome of treatment limitation discussions for newborn infants, a multicentre prospective observational cohort study. Arch Dis Child Fetal Neonatal Ed. 2017;102(2):F104–f109.CrossRef Aladangady N, Shaw C, Gallagher K, Stokoe E, Marlow N. Short-term outcome of treatment limitation discussions for newborn infants, a multicentre prospective observational cohort study. Arch Dis Child Fetal Neonatal Ed. 2017;102(2):F104–f109.CrossRef
32.
go back to reference Leuthner SR. Borderline viability: controversies in caring for the extremely premature infant. Clin Perinatol. 2014;41(4):799–814.CrossRef Leuthner SR. Borderline viability: controversies in caring for the extremely premature infant. Clin Perinatol. 2014;41(4):799–814.CrossRef
33.
go back to reference Caeymaex L, Jousselme C, Vasilescu C, Danan C, Falissard B, Bourrat MM, Garel M, Speranza M. Perceived role in end-of-life decision making in the NICU affects long-term parental grief response. Arch Dis Child Fetal Neonatal Ed. 2013;98(1):F26–31.CrossRef Caeymaex L, Jousselme C, Vasilescu C, Danan C, Falissard B, Bourrat MM, Garel M, Speranza M. Perceived role in end-of-life decision making in the NICU affects long-term parental grief response. Arch Dis Child Fetal Neonatal Ed. 2013;98(1):F26–31.CrossRef
34.
go back to reference Pinter AB. End-of-life decision before and after birth: changing ethical considerations. J Pediatr Surg. 2008;43(3):430–6.CrossRef Pinter AB. End-of-life decision before and after birth: changing ethical considerations. J Pediatr Surg. 2008;43(3):430–6.CrossRef
35.
go back to reference Laventhal N, Spelke MB, Andrews B, Larkin LK, Meadow W, Janvier A. Ethics of resuscitation at different stages of life: a survey of perinatal physicians. Pediatrics. 2011;127(5):e1221–9.CrossRef Laventhal N, Spelke MB, Andrews B, Larkin LK, Meadow W, Janvier A. Ethics of resuscitation at different stages of life: a survey of perinatal physicians. Pediatrics. 2011;127(5):e1221–9.CrossRef
36.
go back to reference Wilkinson D. How much weight should we give to parental interests in decisions about life support for newborn infants? Monash bioethics review. 2010;29(2):13. 11-13.25CrossRef Wilkinson D. How much weight should we give to parental interests in decisions about life support for newborn infants? Monash bioethics review. 2010;29(2):13. 11-13.25CrossRef
Metadata
Title
Decision-making at the limit of viability: differing perceptions and opinions between neonatal physicians and nurses
Authors
Hans Ulrich Bucher
Sabine D. Klein
Manya J. Hendriks
Ruth Baumann-Hölzle
Thomas M. Berger
Jürg C. Streuli
Jean-Claude Fauchère
on behalf of the Swiss Neonatal End-of-Life Study Group
Publication date
01-12-2018
Publisher
BioMed Central
Published in
BMC Pediatrics / Issue 1/2018
Electronic ISSN: 1471-2431
DOI
https://doi.org/10.1186/s12887-018-1040-z

Other articles of this Issue 1/2018

BMC Pediatrics 1/2018 Go to the issue