Skip to main content Skip to main navigation menu Skip to site footer
Review
Published: 29-08-2022

Early palliative care to decrease suffering in neonatal intensive care unit: narrative review

FACERES - Faculty of Medicine of São José do Rio Preto, Sao Paulo, Brazil
FACERES - Faculty of Medicine of São José do Rio Preto, Sao Paulo, Brazil
FACERES - Faculty of Medicine of São José do Rio Preto, Sao Paulo, Brazil
FACERES - Faculty of Medicine of São José do Rio Preto, Sao Paulo, Brazil
Palliative Care Infant Neonate Intensive Care Units

Abstract

Objective: The objectives of this review are to ascertain the diseases that result in palliative care in neonates in NICU and whether such care can ease the suffering of the child or the family. Methods: This is a narrative and descriptive literature review carried out in MEDLINE, PUBMED, VHL, and LILACS BVS databases during November 2020 to May 2021. Descriptors used are “Intensive Care Units,” “Ethics,” “Palliative Care,” and “Newborn,” which are related to Boolean descriptor “AND.” Articles published in English and within the last five years were included in this article. Results: The respiratory diseases and distress, prematurity, congenital abnormalities, and patients at risk of neurological injury represents some of the reasons to refer the patient to the ICU. Beyond that, the three most life-timing complex chronic conditions are neurological, neuromuscular, and cardiovascular diseases. The research emphasizes that the relief in the neonatal ICU is an important factor, in this way, palliative care should be focused mostly on the patient. Conclusion: To date, palliative care is appropriate from the moment when a serious diagnosis is made, otherwise it requires the creation of a protocol that guides patients to healthcare professionals. Regardless, to improve the life quality of the neonates during development, their care must be maintained at all moments of the therapeutic intervention.

Metrics

Metrics Loading ...

References

  1. World Health Organization [internet]. Palliative Care; c2021 [access on January 12, 2021]. Available at: https://www.who.int/health-topics/palliative-care.
  2. Evangelista CB, Lopes MEL, Costa SFG, Batista PSS, Batista JBV, Oliveira AMM. Palliative care and spirituality: an integrative literature review. Rev Bras Enferm. 2016; 69 (3): 554-63.
  3. Cherny NI, Radbruch L, The board of the European Association of Palliative Care. European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. 2009; 23(7): 581-93.
  4. Ranallo L. Improving the Quality of End-of-Life Care in Pediatric Oncology Patients Through the Early Implementation of Palliative Care. J Pediatr Oncol Nurs. 2017; 34 (6): 374-80.
  5. Parravicini E. Neonatal Palliative Care. Curr Opin Pediatr. 2017; 29 (2): 135-40.
  6. Liben S, Papadatou D, Wolfe J. Paediatric palliative care: challenges and emerging ideas. The Lancet. 2008; 371 (9615): 852-64.
  7. Valadares MTM, Mota JAC, Oliveira, BM. Cuidados paliativos em pediatria: uma revisão. Rev Bioét. 2013; 21 (3): 486-93.
  8. Bellazzi JL, Vieira MRR, Cury PM, Augusto MT. Cuidados Paliativos e Doença Crônica na Infância: Quem são as crianças?. Revista de Cuidados Paliativos. 2016; 3 (2): 71-80.
  9. Limbo RK, Wool C, Carter BS. Handbook of Perinatal and Neonatal Palliative Care: a guide for nurses, physicians, and other health professionals. Springer Publising Company, LLC. New York. 2020.
  10. Perinatal palliative care. ACOG Committee Opinion No. 786. American College of Obstetricians and Gynecologists. Obstet Gynecol 2019; 134:84–9.
  11. Paravicini E. Neonatal Palliative Care. Current Opinions in Pediatrics. 2017; 29(2): 135-40.
  12. Boer JC, Gennissen L, Williams M, Dijk M, Tibboel D, Reiss I, et al. Children’s outcomes at 2-years follow-up after 4 years of structured multi-professional medical ethical decision-making in a neonatal intensive care unit. J Perinatol. 2017; 37 (7): 869-74.
  13. 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. 2015; 101 (2):102-7.
  14. Krick JA, Hogue JS, Reese TR, Studer MA. Uncertainty: an uncomfortable companion to Decision-making for Infants. Pediatrics. 2020; 146 (1): 13-7.
  15. Lemmon ME, Bidegain M, Boss RD. Palliative care in neonatal neurology: robust support for infants, families and clinicians. J Perinatol. 2015; 36 (5): 311-7.
  16. Mendes J, Wool J, Wool C. Ethical considerations in Perinatal Palliative Care. J Obstret Gynecol Neonatal Nurs. 2017; 46 (3): 367-77.
  17. Moynihan KM, Jansen MA, Liaw SN, Alexander PMA, Truog RD. An ethical claim for providing medical recommendations in pediatric intensive care. Peatr Crit Care Med. 2018; 19 (8): 433-7.
  18. Kaempf JW, Dirksen K. Extremely premature birth, informed written consent, and the Greek ideal of sophrosyne. 2018; 38 (4): 306-10.
  19. Oliveira FC, Cleveland LM, Darilek U, Silva ARB, Carmona EV. Brazilian neonatal nurses’ palliative care experiences. J Perinat Neonatal Nurs. 2018; 32 (4): 3-10.
  20. Aujoulat I, Henrard S, Charon A, Johansson AB, Langhendries JP, Mostaert A, et al. End-of-life decisions and practices for very preterm infants in the Wallonia-Brussels Federation of Belgium. BMC Pediatr. 2018; 18 (1): 206.
  21. Zimmermann K, Cignacco E, Engberg S, Ramelet AS, Weid N, Eskola K, et al. Patterns of paediatric end-of-life care: a chart review across different care settings in Switzerland. BMC Pediatr. 2018; 18 (1): 67.
  22. Lam V, Kain N, Joynt C, Manen MA. A descriptive report of end-of-life care practices occurring in two neonatal intensive care units. Palliat Med. 2016; 30 (10): 971-8.
  23. Janvier A, Farlow B, Baardsnes J, Pearce R, Barrington KJ. Measuring and communicating meaningful outcomes in neonatology: a family perspective. Semin Perinatol. 2016; 40 (8): 571-7.
  24. Nayeri F, Asghari F, Baser A, Janani L, Shariat M, Eabrhim B. Views and Decisions of Physicians in Encoutering Neonates with Poor Prognosis. Arch Iran Med. 2017; 20 (3): 172-7.
  25. Kaempf JW, Tomlinson MW, Touhey J. Extremely premature birth and the choice of neonatal intensive care versus palliative comfort care: an 18 years single-center experience. J Peronatol. 2016; 36 (3): 190-5.
  26. Jaworski M, Janvier A, Lefebvre F, Luu TM. Parental Perspectives Regarding Outcomes of Very 6reterm Ifants: Toward a Balanced Approach. J Pediatr. 2018; 200: 58-63.
  27. Mendes J, Silva LJ. Concenso Paliativos e Neonatais e em fim de vida. Access on: January 12, 2021. Available at: https://www.spneonatologia.pt/wp-content/uploads/2016/11/2013-Cuidados_paliativos.pdf
  28. Ferrand A, Gorgos A, Ali N, Payot N. Resilience rather than medical factors: how parents predict quality of life of their sick newborn. J Pediatr. 2018; 200: 64-75.
  29. Prentice TM, Janvier A, Gillman L, Donath S, Davis P. Providing clarity around ethical discussion: development of a neonatal intervention score. Acta Paediatr. 2019; 108 (8): 1453-9.
  30. Marmion PJ. Periviability and the “god committee”. Acta Paeditr. 2017; 106 (6): 857-9.
  31. Prentice TM, Janvier A, Gillman L, Davis PG. Moral distress within neonatal and pediatric intensive care units: a systematic review. Arch Dis Child. 2016; 101 (8): 701-8.
  32. Prentice TM, Gillman L, Davis PG, Janvier A. Always a burden? Healthcare providers’ perspectives on moral distress. Arch Dis Child Fetal Neonatal Ed. 2018; 103 (5): 441-5.
  33. Forouzi MA, Banazadeh M, Ahmadi JS, Razban F. Barriers of Palliative Care in Neonatal Intensive Care Units. Am J Hosp Palliat Care. 2017; 34 (3): 205-11.
  34. Menin GE, Pettenon MK. Terminally child life: perceptions and feelings of nurses. Rev Bioet. 2017; 23 (3): 608-14.
  35. World Health Organization [homepage na Internet]. WHO definition of palliative care. Access on: January 10, 2021. Available at: https://www.who.int/news-room/fact-sheets/detail/palliative-care.
  36. Lima RPG. Palliative care: chanllenges for the health systems. Rev Latino Am Enfermagem. 2011; 19(2): 227-8
  37. Summer LH, Kavanaugh K, Moro T. Extending palliative care into pregnancy and the immediate newborn period. J Perinat Neonat Nurs. 2006; 20(1): 113-6.
  38. Boss R, Kavanaugh K, Kobler K. Prenatal and Neonatal Palliative Care. In: Wolfe J, Hinds P, Sourkes B. Textbook of interdisciplinary pediatric palliative care. Philadelphia: Souders; 2011.
  39. Liben S, Wolfe J. Paediatric palliative care: challenges and emerging ideas. The Lancet. 2008; 371(9615): 852-64.
  40. Mancini A, Bluebond-Langer M. Training neonatal staff for the future in neonatal palliative care. Seminars in Fetal and Neonatal Medicine. 2013; 18(2): 111-5.
  41. Committee on Bioethics and Committe on Hospital Care. Palliative Care for Children. American Academy of Pediatrics. 2021; 106(2): 351-7.
  42. Carlet J, Thijs LG, Antonelli M, Cassel J, Cox P, Hill N. Challenges in end-of-life care in the ICU. Intensive Care Medicine. 2004; 30: 770-84.
  43. Gavrin J. Ethical considerations at the end of life in the intensive care unit. Critical Care Medicine. 2007; 35(2): 85-94.
  44. Himelstein BP. Palliative care for infants, children, adolescents, and their families. Journal of Palliative Medicine. 2006; 9(1): 163-81.
  45. Bhatia J. Palliative care in the fetus and newborn. J Perinatol. 2006; 26: 24-6.
  46. Becker SP. Wilderness Therapy: ethical considerations for mental health professionals. Child & Youth Care Forum. 2010; 39: 47-61.
  47. Heyland DK, Allan DE, Rocker G, Dodek P, Pichora D, Gafni A. Discussing prognosis with patients and their families near the end of life: impact on satisfaction with end-of-life. Open Med. 2009; 3(2): 101-10.
  48. Mizrahi T, Abramson JS. Collaboration between social workers and physicians. Social Work in Health Care. 2000; 31(3): 1-24.
  49. Heimer CA. Competing institutions: law, medicine, and family in neonatal intensive care. Law & Society Review. 1999: 33(1): 17-66.
  50. Kirkbride V. Managing complex ethical problems on the neonatal unit. Medical ethics. 2013; 9(2): 66-70.
  51. Kukura E. Birth conflicts: leveraging state power to coerce health care decision-making. University of Baltimore Law Review. 2018; 47(2): 247-94.
  52. Choe K, Kang Y, Park Y. Moral distress in critical care nurses: a phenomenological study. Journal of Advanced Nursing. 2015; 71(7): 1684-93.
  53. Osterweis M, Solomon F, Green M. Institute of medicine (US) committee for the study of health consequences of the stress of bereavement. Washington (DC): National Academies Press (US); 1994.
  54. Thomas TA, Reed PA. Ethics: a historical perspective. In: Mazur KA, Berg SL.Ethical issues in pediatric hematology/oncology. Houston: Springer; 2020.
  55. Lawn JE, Blencowe H, Oza S, You D, Lee AC, Waiswa P et al. Every Newboen: profress, priorities, and potential beyond survival. 2014; 384(9938):185-205.
  56. Connor SR et al. Global Atlas of Palliative Care, 2nd edition. World of Health Organization. 2020. Available at: http://www.thewhpca.org/resources/global-atlas-on-end-of-life-care.

How to Cite

Santos, M. G. de O., Ferrari, N., Alvarenga, M. R. da C., & Cury, P. M. (2022). Early palliative care to decrease suffering in neonatal intensive care unit: narrative review. MedNEXT Journal of Medical and Health Sciences, 3(3). https://doi.org/10.54448/mdnt22313