Fine vita in neonatologia. Una revisione sistematica

Journal title SALUTE E SOCIETÀ
Author/s Carmelo Guarino
Publishing Year 2017 Issue 2017/3
Language Italian Pages 14 P. 31-44 File size 83 KB
DOI 10.3280/SES2017-003004
DOI is like a bar code for intellectual property: to have more infomation click here

Below, you can see the article first page

If you want to buy this article in PDF format, you can do it, following the instructions to buy download credits

Article preview

FrancoAngeli is member of Publishers International Linking Association, Inc (PILA), a not-for-profit association which run the CrossRef service enabling links to and from online scholarly content.

The concept of "end of life decisions", which refers to all decisions and practices relating to the stages of end of life, constitutes a specific and delicate aspect of medicalization of death, and may vary from advance directives for treatment (or living wills) to the various forms of euthanasia, involving the field of palliative care too. Italy, despite the ratification of the Oviedo Convention in 2001, unlike many other countries, has not yet adopted a law that guarantees people the right of choice before critical and irreversible pathologies, revealing a weak point whose implications and consequences are revealed clinically, legally and socially for both patients, families and doctors. If we look specifically at the end of life in the neonatalogical area, the issue becomes even more complex, revealing the most delicate aspects and levels of analysis in relation to the specificity of the case. This paper, according to the international current debate and through the Cochrane’s Systematic review, explores dynamics, priority references, and motivations behind the end of life decisions in a neonatal setting, in conditions of extreme prematurity or serious congenital malformations or chromosomal pathologies that are not compatible with life.

Keywords: End of life; neonatology; palliative care; euthanasia; evidence and guidelines; parents.

  1. Ainis M. (2017). I dieci diritti negati dal Parlamento immobile. La Repubblica. 18 marzo.
  2. Bailey K.D. (1978). Methods of social research. New York, NY: The Free Press (trad. it.: Metodi della ricerca sociale. Bologna: Il Mulino, 1994).
  3. Bramwell V.H., Williams C.J. (1997). Do authors of review articles use systematic methods to identify, assess and synthesize information? Ann Oncol., Dec; 8 (12): 1185-1195.
  4. Butler A., Hall H., Copnell B. (2016). A guide to writing a qualitative systematic review protocol to enhance evidence-based practice in nursing and health care. Worldviews Evid Based Nurs, 13(3): 241-249.
  5. *Catlin A. (2011). Transition from curative efforts to purely palliative care for neonates: does physiology matter? Adv Neonatal Care, Jun; 11(3): 216-222.
  6. Cipolla C., a cura di (2004). Manuale di sociologia della salute. Milano: FrancoAngeli.
  7. Corbin J., Strauss A. (1990). Grounded theory research: procedures, canons, and evaluative criteria. Qualitative Sociology, Mar; 13(1): 3-21.
  8. *Cuttini M., Nadai M., Kaminski M., Hnsen G., de Leeuw R., Lenoir S., Persson J., Rebagliato M., Reid M., de Vonderweid U., Lenard H.G., Orzalesi M., Saracci R. (2000). End-of-life decisions in neonatal intensive care: physician’s self-reported practices in seven European countries. EURONIC Study Group. Lancet, June, 355 (9221): 2112-2118. DOI: 10.1016/S0140-6736(00)02378-
  9. Cuttini M., Casotto V., Kaminski M., de Beaufort I., Berbik I., Hansen G., Kollée L., Kucinskas A., Lenoir S., Levin A., Orzalesi M., Persson J., Rebagliato M., Reid M., Saracci R. (2004). Should euthanasia be legal? An international sur-vey of neonatal intensive care units staff. Arch Dis Child Fetal Neonatal Ed, January; 89 (1): F19-24.
  10. *Cuttini M., Casotto V., de Vonderweid U., Garel M., Kollée L.A., Saracci R. e EURONIC Study Group (2009). Neonatal end-of-life decisions and bioethical perspectives. Early Hum Dev, Oct; 85(10 Suppl): S21-25.
  11. *Dageville C., Bétrémieux P., Gold F., Simeoni U., Working Group on Ethical Issues in Perinatology (2011). The French Society of Neonatology’s proposals for neonatal end-of-life decision-making. Neonatology, 100(2): 206-214. DOI: 10.1159/00032411
  12. D’Agostino F. (1996). Bioetica. Nella prospettiva della filosofia del diritto. Torino: Giappichelli Editore.
  13. *de Vos M.A., van der Heide A., Maurice-Stam H., Brouwer O.F., Plötz F.B., Schouten-van Meeteren A.Y., Willems D.L., Heymans H.S., Bos A.P. (2011). The process of end-of-life decision-making in pediatrics: a national survey in the Netherlands. Pediatrics, Apr; 127(4): e1004-1012.
  14. *de Vos M.A., Bos A.P., Plötz F.B., van Heerde M., de Graaff B.M., Tates K., Truog R.D., Willems D.L. (2015). Talking with parents about end-of-life deci-sions for their children. Pediatrics, Feb; 135(2): e465-76.
  15. *Eden L.M., Callister L.C. (2010). Parent Involvement in End-of-Life Care and Decision Making in the Newborn Intensive Care Unit: An Integrative Review. J Perinat Educ, Winter; 19(1): 29-39. DOI: 10.1624/105812410X48154
  16. Gambaro F. (2014). Touraine: ripartiamo dall’etica individuale. La Repubblica. 3 ottobre.
  17. Gesang B. (2008). Passive and active euthanasia: what is the difference? Medicine, Health Care and Philosophy, June; 11 (2): 175-180.
  18. Gets L., Kirkengen A.L., Hettlevik I., Romundstad S., Sigurdsson J.A. (2004). Ethical dilemmas arising from implementation of the European guidelines on car-diovascular disease prevention in clinical practice. A descriptive epidemiological study. Scand J Prim Health Care, December; 22 (4): 202-208. DOI: 10.1080/0281343041000669
  19. Glaser G.B., Strauss L.A. (2012). The discovery of grounded theory: strategies for qualitative research. 7a ristampa. New Brunswich, NJ (USA) and London (UK): Aldine Transaction.
  20. *Guimarães H., Rocha G., Bellieni C., Buonocore G. (2012). Rights of the newborn and end-of-life decisions. J Matern Fetal Neonatal Med, Apr; 25 (Suppl 1): 76-8. DOI: 10.3109/14767058.2012.66524
  21. *Hechler T., Blankenburg M., Friedrichsdorf S., Garske D., Hübner B., Menke A., Wamsler C., Wolfe J., Zernikow B. (2008). Parent’s perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer. Klin Padiatr, May-Jun; 220(3): 166-174.
  22. Hjørland B. (2013). Facet analysis: the logical approach to knowledge organization. Information Processing & Management, March; 49 (2): 545-557.
  23. Istat (2014). La mortalità dei bambini ieri e oggi in Italia. Anni 1887-2011. In www.istat.it.
  24. *Janvier A., Barrington K., Farlow B. (2014). Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology. Semin Perinatol, Feb; 38(1): 38-46.
  25. Joly Y., Knoppers B.M., a cura di (2015). Routledge handbook of medical law and ethics. New York, NY: Routledge.
  26. *Larcher V. (2013). Ethical considerations in neonatal end-of-life care. Semin Fe-tal Neonatal Med, Apr; 18(2): 105-110.
  27. Löfmark R., Nilstun T., Cartwright C., Fischer S., van der Heide A., Mortier F., Norup M., Simonato L., Onwuteaka-Philipsen B., the EURELD Consortium (2008). Physician’s experiences with end-of-life decision-making: Survey in 6 European countries and Australia. BioMed Central Medicine, February; 6 (1): 4. DOI: 10.1186/1741-7015-6-
  28. Magni F.S., Massarenti A. (2010). Etica ed esercizio della medicina. In: Pagnini A., a cura di, Filosofia della medicina. Epistemologia, ontologia, etica diritto. Roma: Carocci.
  29. *Mendes J.C., Justo da Silva L. (2013). Neonatal palliative care: developing consensus among neonatologists using the Delphi technique in Portugal. Adv Neo-natal Care, Dec; 13(6): 408-414. DOI: 10.1097/ANC.000000000000003
  30. Mori M. (2008). Il caso Eluana Englaro. La “Porta Pia” del vitalismo ippocratico, ovvero perché è moralmente giusto sospendere ogni intervento. Bologna: Edizioni Pendragon.
  31. *Moriette G., Rameix S., Azria E., Fournié A., Andrini P., Caeymaex L., Dageville C., Gold F., Kuhn P., Storme L., Siméoni U; Groupe de réflexion sur les aspects éthiques de la périnatologie (2010). Very premature births: Dilemmas and management. Part 1. Outcome of infants born before 28 weeks of postmen-strual age, and definition of a gray zone. Arch Pediatr, May;17(5): 518-526.
  32. *Moriette G., Rameix S., Azria E., Fournié A., Andrini P., Caeymaex L., Dageville C., Gold F., Kuhn P., Storme L., Siméoni U.; Groupe de réflexion sur les aspects éthiques de la périnatologie (2010). Very premature births: Dilemmas and management. Second part: Ethical aspects and recommendations. Arch Pediatr, May; 17(5): 527-539.
  33. Neresini F. (2006). Bioetica, medicina e società. In: Bucchi M., Neresini F. a cura di, Sociologia della salute. Roma: Carocci.
  34. *Orzalesi M.M., Cuttini M. (2011). Ethical issues in neonatal intensive care. Ann Ist Super Sanita, 47(3): 273-277. DOI: 10.4415/ANN_11_03_0
  35. Paci E., Miccinesi G. (2008). Come si muore in Italia. Lo studio Itaeld-Fnomceo. La Professione. Medicina, scienza, etica e società. I quaderni, 1: 107-119.
  36. Patroni Griffi A. (2016). Le regole della bioetica tra legislatore e giudici. Napoli: Editoriale Scientifica.
  37. *Rebagliato M., Cuttini M., Broggin L., Berbik I., de Vonderweid U., Hansen G., Kaminski M., Kollée L.A., Kucinskas A., Lenoir S., Levin A., Persson J., Reid M., Saracci R.; EURONIC Study Group (European Project on Parent’s Information and Ethical Decision Making in Neonatal Intensive Care Units) (2000). Neonatal end-of-life decision making: Physician’s attitudes and relationship with self-reported practices in 10 European countries. JAMA, Nov 15; 284(19): 2451-2459.
  38. Rodotà S. (2014). Perché i diritti non sono un lusso in tempo di crisi. La Repubblica. 20 ottobre.
  39. Sala V., Moja L., Moschetti I., Bidoli S., Pistotti V., Liberati A. (2006). Revisioni sistematiche. Centro Cochrane Italiano. In www.cochrane.it.
  40. Siwek J. (2002). Writing evidence-based clinical reviews. Am Fam Physician, Jan 15; 65 (2): 175.
  41. Touraine A. (2010). Après la crise. Paris: Editions du Seuil (trad. it.: Dopo la crisi una nuova società possibile. Roma: Armando Editore, 2012).
  42. Trappe H.J. (2015). Ethics in intensive care and euthanasia: with respect to inactivating defibrillators at the end of life in terminally ill patients. Medizinische Klinik-Intensivmedizin und Notfallmedizin, November, 17: 1-7.
  43. *Uthaya S., Mancini A., Beardsley C., Wood D., Ranmal R., Modi N. 2014. Managing palliation in the neonatal unit. Arch Dis Child Fetal Neonatal Ed, Sep; 99(5): F349-352.
  44. *Verhagen E., Sauer P.J. (2005). The Groningen protocol-euthanasia in severely ill newborns. N Engl J Med, March 10; 352 (10): 959-962.
  45. *Verhagen E., van der Hoeven M., van Meerveld C., Sauer P.J. (2007). Physician medical decision-making at the end of life in newborns: insight into implementation at 2 dutch centers. Pediatrics, Jul; 120(1): e20-e28.
  46. *Verhagen E. (2013). The Groningen Protocol for newborn euthanasia; which way did the slippery slope tilt? J Med Ethics, May; 39(5): 293-295.
  47. *Verhagen E. (2014). Neonatal euthanasia: lessons from the Groningen Protocol. Semin Fetal Neonatal Med, 2014 Oct; 19(5): 296-299.
  48. Verhagen E. (2008). È uccidere o prendersi cura. Micromega, n. 1, suppl: 72-76.
  49. *Willems D.L., Verhagen E., van Wijlick E.; Committee End-of-Life Decisions in Severely Ill Newborns of Royal Dutch Medical Association (2014). Infant’s best interests in end-of-life care for newborns. Pediatrics, Oct; 134(4): e1163-1168.
  50. Williamson R.C. (2001). How to write a review article. Hosp Med, Dec; 62 (12): 780-782.

Carmelo Guarino, Fine vita in neonatologia. Una revisione sistematica in "SALUTE E SOCIETÀ" 3/2017, pp 31-44, DOI: 10.3280/SES2017-003004