Shared decisions in neonatal intensive care − bioethical approach

Authors

  • Carmen Carvalho Neonatal Intensive Care Unit, Centro Materno-Infantil do Norte, Centro Hospitalar Universitário do Porto
  • Ana Cristina Freitas Neonatal Intensive Care Unit, Centro Materno-Infantil do Norte, Centro Hospitalar Universitário do Porto
  • Liliana Pinho Neonatal Intensive Care Unit, Centro Materno-Infantil do Norte, Centro Hospitalar Universitário do Porto
  • Ana Novo Neonatal Intensive Care Unit, Centro Materno-Infantil do Norte, Centro Hospitalar Universitário do Porto

DOI:

https://doi.org/10.25753/BirthGrowthMJ.v30.i1.20315

Keywords:

bioethics, decision-making, narrative medicine, neonatal intensive care, newborn

Abstract

Technological and therapeutic advances in neonatal intensive care have led to a decrease in neonatal morbidity and mortality in recent decades. Along with technical and scientific expertise, it is important to provide a holistic and comprehensive approach to the care of the newborn and family. The purpose of this review is to describe and analyze strategies to improve decision-making within a shared process between health professionals and caregivers at neonatal intensive care setting.

The decision-making process is not linear or immutable over time and there is no consensus on the definition of ‘shared decision’. More unanimous is the role of communication as a atherapeutic relationship pillar. Professional ethics, bioethics, and narrative medicine should be used as tools to address the vulnerabilities of families and professionals and as a way to consolidate and structure the human relational dimension intrinsic to medical practice.

Author Biography

Carmen Carvalho, Neonatal Intensive Care Unit, Centro Materno-Infantil do Norte, Centro Hospitalar Universitário do Porto

Neonatologista do CMIN- Centro Hospitalar do Porto

Elemento da Direção da Sec Neonatologia da SPP

Elemento do Colégia da Subespecialidade de Neonatologia

References

Lefkowitz DS, Baxt C, Evans JR. Prevalence and correlates of posttraumatic stress and postpartum depression in parents of infants in the neonatal intensive care unit (NICU). J Clin Psychol Med Settings 2010; 17:230–7. https://doi.org/10.1007/s10880-010-9202-7.

Arzani A, Valizadeh L, Zamanzadeh V, Mohammadi E. Mothers’ strategies in handling the prematurely born infant: a qualitative study. Journal of Caring Sciences 2015; 4:13–24.

https://doi.org/10.5681/jcs.2015.002.

Finlayson K, Dixon A, Smith C, Dykes F, Flacking R. Mothers’ perceptions of family centred care in neonatal intensive care units. Sex Reprod Healthc 2014; 5:119-24. https://doi.org/10.1016/j.srhc.2014.06.003.

Purdy I, Wadhwani R. Embracing bioethics in neonatal intensive care, part II: case histories in neonatal ethics. Neonatal Netw 2006; 25:43-53.

Lantos J. Ethical problems in decision making in the neonatal ICU. N Engl J Med 2018; 379:1851-60. https://doi.org/10.1056/NEJMra1801063.

Sauer P, Ethics Working Group of Confederation of European Specialists in Paediatrics (CESP). Ethical dilemmas in neonatology: recommendations of the ethics working group of the CESP (Confederation of European Specialists in Paediatrics). Eur J Pediatr 2001; 160:364-8.

Bany-Mohammed F, Beals D. Neonatal Bioethics. In: Gomella T, editors. Neonatology. 7nd ed. New York: McGraw-Hill Education; 2013.

Fanaroff J. Medical ethics in neonatal care. In: Martin R, Fanaroff A, Walsh M, editors. Fanaroff and Martin´s Neonatal-Perinatal Medicine: diseases of the fetus and infant. 10nd ed. London: Elsevier Health Sciences; 2014.

Charon R. Narrative Medicine: Honoring the stories of illness. Oxford: Oxford University Press; 2006.

Charon R. The patient-physician relationship - A model for empathy, reflection, profession, and trust. JAMA 2001; 286:1897-902.

Richard A, Levy S, Council on Children with Disabilities. Shared Decision-making and children with disabilities: pathways to consensus. Pediatrics 2017; 139:e20170956. https://doi.org/10.1542/peds.2017-0956.

Meadow W, Lantos J. Ethics, data and policy in newborn intensive care. In: Gleason C, Devaskar S, editors. Avery´s diseases of the newborn. 10nd ed. Philadelphia: Elsevier; 2018.

Gracia D. Ethical case deliberation and decision making. Medicine, Health Care, and Philosophy 2003; 6:227–33. https://doi.org/10.1023/A:1025969701538.

Hawley S, Morris A. Cultural challenges to engaging patients in shared decision making. Patient Educ Couns 2017; 100:18-24. https://doi.org/10.1016/j.pec.2016.07.008.

Lee S, O’Brien K. Parents as primary caregivers in the neonatal intensive care unit. CMAJ 2014; 186:845-7. https://doi.org/10.1503/cmaj.130818.

Weiss E, Barg F, Cook N, Black E, Joffe S. Parental decision-making preferences in neonatal intensive care. J Pediatr 2016; 179:36-41. https://doi.org/10.1016/j.jpeds.2016.08.030.

Carvalho C, Vale A, Magalhães S. Communication and decision making in neonatal intensive care: why narrative medicine matters. In: Pope E, Brandão C, Rosário A, Costa A, editors. Qualitive Research: practices and challenges. Ludomedia; 2020. https://doi.org/10.36367/ntqr.1.2020.104-12.

Levetown M. Communicating with children and families: From everyday interactions to skill in conveying distressing information. Pediatrics 2008; 121:e1441-60. https://doi.org/10.1542/peds.2008-0565.

Zonza M. Narrative Based Medicine and Neonatology : an interpretative approach. Journal of Pediatric and Neonatal Individualized Medicine 2012; 1:49–52. https://doi.org/10.7363/010114.

Wigert H, Dellenmark BM, Bry K. Parents’ experiences of communication with neonatal intensive-care unit staff: An interview study. BMC Pediatrics 2014; 14:1–8. https://doi.org/10.1186/s12887-014-0304-5.

Clarke-Pounder JP, Boss RD, Roter DL, Hutton N, Larson S, Donohue PK. Communication intervention in the neonatal intensive care unit: Can It backfire? Journal of Palliative Medicine 2015; 18:157–61. https://doi.org/10.1089/jpm.2014.0037.

Daboval T, Shidler S. Ethical framework for shared decision making in NICU: Communicative ethics. Ped Child Health 2014; 19:302-4.

Levetown M, American Academy of Pediatrics Committee on Bioethics. Communicating with children and families; from everyday interactions to skill in conveying distressing information. Pediatrics 2008; 121:1441-1460. https://doi.org/10.1542/peds.2008-0565.

Hester D. Interests and neonates: there is more to the story than we explicitly acknowledge. Theoretical Medicine and Bioethics 2007; 28:357-72.

Kadivar M, Seyedfatemi N, Acbari N, Haghani H. The effect of narrative writing on maternal stress in neonatal intensive care settings. J Maternal Fetal Neonatal Med 2015; 28: 938-43. https://doi.org/10.3109/14767058.2014.937699.

Donzelli G. Medical humanities and narrative medicine in perinatal care. J Maternal Fetal Neonatal Med 2015; 28: 1-2. https://doi.org/10.3109/14767058.2014.900041.

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Published

2021-04-06

How to Cite

Carvalho, C., Freitas, A. C., Pinho, L., & Novo, A. (2021). Shared decisions in neonatal intensive care − bioethical approach. NASCER E CRESCER - BIRTH AND GROWTH MEDICAL JOURNAL, 30(1), 39–43. https://doi.org/10.25753/BirthGrowthMJ.v30.i1.20315

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