Ethical Challenges of Saving Extremely Premature Infants Using a Grounded Theory: Iranian Neonatologists’ Perception

Document Type : Original Article

Authors

1 Medical Ethics Department, School of Traditional Medicine, Shahid Beheshti University of Medical Sciences, Tehran, Iran

2 Medical Ethics, Medical Ethics Department, Medical School, Iran University of Medical Sciences, Tehran, Iran

Abstract

Background: Extremely premature infants are at greater risks of cognitive, behavioral, growth, and developmental problems, compared to the term infants. In addition to physical problems, these infants also incur a lot of emotional costs, stress, and financial burden to the family. This study aimed to explore ethical challenges and factors affecting decisions about initiation, sustain, and termination of the life of extremely premature infants that neonatologists face every day in the clinics.
Methods: The present qualitative study was conducted based on a grounded theory. The participants were 21 practitioners who were interviewed after giving consent and being briefed about the study. All interviews were recorded, transcribed, and then analyzed in this study. The data were then analyzed using Strauss-Corbin (1998) method in three phases of open, axial, and selective coding.
Results: During analysis, 1420 initial (open) codes, 19 subcategories, and two specific categories were obtained to explain the ethical challenges of decision-making on the sustaining or terminating the life of extremely premature infants. These categories included 1) Independent decision-making of physicians, followed by two subcategories of "professional decision-making based on knowledge and clinical experience" and "uncertainty about the consequences of consulting with parents", and 2) Improper conditions and facilities, followed by three subcategories of "lack of local scientific resources on medical ethics", "inefficient neonatal intensive care units", and "lack of efficient rules and guidelines". According to the obtained results, factors leading to ethical challenges included the lack of ethical and legal guidelines tailored to clinical conditions, lack of local scientific documentation in accordance with clinical conditions and health facilities available in the Neonatal Intensive Care Unit (NICU), conflicts between the current law on life preservation and moral guidelines, and lack of facilities, manpower, and equipment in the NICU.
Conclusion: A physician’s decision is based on personal scientific and clinical experiences according to the conditions of the wards.

Keywords


  1. Blencowe H, Cousens S, Oestergaard MZ, Chou D, Moller AB, Narwal R, et al. National, regional, and worldwide estimates of preterm birth rates in the year 2010 with time trends since 1990 for selected countries: a systematic analysis and implications. Lancet. 2012; 379(9832):2162-72.
  2. Russell G, Sawyer A, Rabe H, Abbott J, Gyte G, Duley L, et al. Parents' views on care of their very premature babies in neonatal intensive care units: a qualitative study. BMC Pediatr. 2014; p.2-3.
  3. Wigert H, Johansson R, Berg M, Hellstrom AL. Mothers’ experiences of having their newborn child in a neonatal intensive care unit. Scand J Caring Sci. 2006; 20(1):35-41.
  4. Davis L, Edwards H, Mohay H, Wollin J. The impact of very premature birth on the psychological health of mothers. Early Hum Devt. 2003; 73(1-2):61-70.
  5. Guillaume S, Michelin N, Amrani E, Benier B, Durrmeyer X, Lescure S, et al. Parents' expectations of staff in the early bonding process with their premature babies in the intensive care setting: a qualitative multicenter study with 60 parents. BMC Pediatr. 2013; 13:18.
  6. Moro TT, Kavanaugh K, Savage TA, Reyes MR, Kimura RE, Bhat R. Parent decision making for life support for extremely premature infants: from the prenatal through end-of-life period. J Perinat Neonatal Nurs. 2011; 25(1):53-54.
  7. Kynø NM, Ravn IH, Lindemann R, Smeby NA, Torgersen AM, Gundersen T. Parents of preterm-born children; sources of stress and worry and experiences with an early intervention programme - a qualitative study. BMC Nurs. 2013; p.1-2
  8. van der Heide A, van der Maas PJ, van der Wal G, Kollée LA, de Leeuw R, Holl RA. The role of parents in end-of-life decisions in neonatology: physicians' views and practices. Pediatrics. 1998; 101(3 Pt 1):413-8.
  9. Hajjaj FM, Salek MS, Basra MK, Finlay AY. Non-clinical influences on clinical decision-making: a major challenge to evidence-based practice. J R Soc Med. 2010; 103(5):178-87.

10. Coulter A, Parsons S, Askham J. Where are the patients in decision-making about their own care? World health organization 2008 and world health organization, on behalf of the European observatory on health systems and Policies 2008 Denmark. Geneva: World health organization; 2008.

11. Lipstein EA, Brinkman WB, Britto MT. What is known about parents' treatment decisions? A narrative review of pediatric decision making. Med Decis Making. 2012; 32(2):246-58.

12. Butz AM, Walker JM, Pulsifer M, Winkelstein M. Shared decision making in school age children with asthma. Pediatr Nurs. 2007; 33(2):111-6.

13. Rylance G. Privacy, dignity, and confidentiality: interview study with structured questionnaire. BMJ. 1999; 318(7179):301.

14. Elger BS. Violations of medical confidentiality: opinions of primary care physicians. Br J Gen Pract. 2009; 59(567):e344-349.

15. Ozawa S, Walker DG. Comparison of trust in public vs private health care providers in rural Cambodia. Health Policy Plan. 2011; 26(Suppl 1):i20-9.

16. Vrakking AM, van der Heide A, Arts WF, Pieters R, van der Voort E, Rietjens JA, et al. Medical end-of-life decisions for children in the Netherlands. Arch Pediatr Adolesc Med. 2005; 159(9):802-9.

17. Papadimitriou V, Tosello B, Pfister R. Effect of written outcome information on attitude of perinatal healthcare professionals at the limit of viability: a randomized study. BMC Med Ethics. 2019; 20(1):74.

18. Dugdale DC, Epstein R, Pantilat SZ. Time and the patient-physician relationship. J Gen Intern Med. 1999; 14(Suppl 1):S34-40.

19. Kitzinger J. Qualitative research. Introducing focus groups. BMJ. 1995; 311(7000):299-302.

20. Kaaresen PI, Rønning JA, Tunby J, Nordhov SM, Ulvund SE, Dahl LB. A randomized controlled trial of an early intervention program in low birth weight children: outcome at 2 years. Early Hum Dev. 2008; 84(3):201-9.

21. Zigler EF. Handbook of early childhood intervention. Cambridge: Cambridge University Press; 2000. P. 135-59.

22. Olafsen KS, Kaaresen PI, Handegård BH, Ulvund SE, Dahl LB, Rønning JA. Maternal ratings of infant regulatory competence from 6 to 12 months: influence of perceived stress, birth-weight, and intervention: a randomized controlled trial. Infant Behav Dev. 2008; 31(3):408-21.

23. Fernandez A, Mondkar JA. Status of neonatal intensive care units in India. J Postgrad Med. 1993; 39(2):57-9.

24. Jonsen AR, Siegler M, Winslade WJ. Clinical ethics: a practical approach to ethical decisions in clinical medicine. New York: McGraw Hill; 1997. P. 1-12.

25. Mullen PD, Reynolds R. The potential of grounded theory for health education research: linking theory and practice. Health Educ Monogr. 1978; 6(3):
280-94.

26. Tolley EE, Ulin PR, Mack N, Robinson ET, Succop SM. Qualitative methods in public health: a field guide for applied research. New Jersey: John Wiley & Sons; 2016. P. 4-6

27. Sekimoto M, Asai A, Ohnishi M, Nishigaki E, Fukui T, Shimbo T, et al. Patients' preferences for involvement in treatment decision making in Japan. BMC Fam Pract. 2004; 5:1.

28. Benbassat J, Pilpel D, Tidhar M. Patients' preferences for participation in clinical decision making: a review of published surveys. Behav Med. 1998; 24(2):81-8.

29. Tates K, Meeuwesen L. Doctor-parent-child communication. A (re)view of the literature. Soc Sci Med. 2001; 52(6):839-51.

30. Palazzi DL, Lorin MI, Turner TL, Ward MA, Cabrera AG. Communicating with pediatric patients and their families: the Texas children’s hospital guide
for physicians, nurses and other healthcare professionals. Houston, TX: Texas Children's Hospital; 2015.

31. Moro TT, Kavanaugh K, Savage TA, Reyes MR, Kimura RE, Bhat R. Parent decision making for life support for extremely premature infants: from the prenatal through end-of-life period. J Perinat Neonatal Nurs. 2011; 25(1):54-60.

32. Meert KL, Thurston C, Sarnaik AP. Parental decisions regarding limitation of care and withdrawal of support in critically ill children. Crit Care Med. 1999; 27(12):A83.

33. Brosig CL, Pierucci RL, Kupst MJ, Leuthner SR. Infant end-of-life care: the parents' perspective. J Perinatol. 2007; 27(8):510-6.

34. McHaffie HE, Laing IA, Parker M, McMillan
J. Deciding for imperilled newborns: medical authority or parental autonomy? J Med Ethics. 2001; 27(2):104-9.

35. Kavanaugh K, Savage T, Kilpatrick S, Kimura R, Hershberger P. Life support decisions for extremely premature infants: report of a pilot study. J Pediatr Nurs. 2005; 20(5):347-59.

36. Widger KA, Wilkins K. What are the key components of quality perinatal and pediatric end-of-life care? A literature review. J Palliat Care.

37. Aburawi EH. Medical ethics in the developing world: time to strengthen the rules. Ibnosina J Med Biomed Sci. 2010; 2(3):103-4.

38. Rajput V, Bekes CE. Ethical issues in hospital medicine. Med Clin North Am. 2002; 86(4):869-86.

39. Garg P, Bolisetty S. Neonatology in developed and developing nations. Indian J Pediatr. 2007; 74(2):169-71.

40. Corchia C, Fanelli S, Gagliardi L, Bellù R, Zangrandi A, Persico A, et al. Work environment, volume of activity and staffing in neonatal intensive care units in Italy: results of the SONAR-nurse study. Ital J Pediatr. 2016; 42:34.