End of life in neonatology. A qualitative research

Journal title SOCIOLOGIA DEL DIRITTO
Author/s Carmelo Guarino
Publishing Year 2017 Issue 2017/3
Language Italian Pages 26 P. 127-152 File size 463 KB
DOI 10.3280/SD2017-003006
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The end of life in neonatology reveals delicate and complex issues as well as levels of analysis in every single specific case that are all closely related to the child’s best interest, to parenthood and to the undelayable need of a clear legal framework of reference. However, though the end of life in neonatology is characterized by peculiar clinical, psychological and ethical features, it seems to reveal the same dynamics of adults’ end of life, despite some differences. Through the awareness that the effectiveness and rationality of contemporary medicine are related to principles of appropriateness and to the specificity of the individual clinical cases, this research investigates the dynamics underlying medical decisions about the end of life in neonatology in life-limiting conditions.

Keywords: End of life - Neonatology - Guidelines - Doctors - Parents

  1. Ainis, Michele, 2014. Tra fine vita e ipocrisie di Stato. Corriere della Sera, 12 giugno.
  2. Antonelli, Ferruccio, 1990. Per morire vivendo. Psicologia della morte. Roma: Citta nuova.
  3. Atkinson, Robert, 1998. The Life Story Interview. London, UK - New York, NY - Thousand Oaks, CA: Sage Publications.
  4. Babgi, Amani, 2009. Legal Issues in End-of-life Care: Perspectives from Saudi Arabia and United States. American Journal of Hospice and Palliative Care. April/May; 26 (2): 119-27. DOI.org/10.1177/1049909108330031.
  5. Bailey, Kenneth, [1978]1995. Methods of Social Research. Traduzione italiana Metodi della ricerca sociale. Bologna: il Mulino.
  6. Beaty, Darla, 2015. Approaches to Death and Dying: A Cultural Comparison of Turkey and the United States. Omega. Journal of Death and Dying. February, 70 (3): 301-16. DOI.org/10.1177/0030222815568962.
  7. Benedetto XVI, 2009. Discorso ai partecipanti alla XIV Assemblea generale della PAV. In Elio Sgreccia & Jean Lafitte (a cura di), Accanto al malato inguaribile e al morente: orientamenti etici e operativi. Atti della quattordicesima assemblea della Pontificia Accademia per la Vita. Città del Vaticano: Libreria Editrice Vaticana.
  8. Bernheim, Jan, Wim Distelmans, Arsène Mullie & Michael Ashby, 2014. Questions and Answers on the Belgian Model of Integral End-of-life Care: experiment? Prototype?: “Eueuthanasia”: the close historical, and evidently synergistic, relationship between palliative care and euthanasia in Belgium: an interview with a doctor involved in the early development of both and two of his successors. Journal of Bioethical Inquiry. Dec. 11, 4: 507-29. DOI 10.1007/s11673-014-9554-z.
  9. Bertaux, Daniel, 1980. L’approche biographique. Sa validité méthodologique, ses potentialités. Cahiers Internationaux de Sociologie. LXIX: 197-225.
  10. Bichi, Rita, 2002. L’intervista biografica. Una proposta metodologica. Milano: Vita e Pensiero.
  11. Boudon, Raymond, [1969]1996. Les méthodes en sociologie. Traduzione italiana Metodologia della ricerca sociologica. Bologna: il Mulino.
  12. —, [1984]1985. La place du désordre. Critique des théories du changement social. Traduzione italiana Il posto del disordine. Bologna: il Mulino.
  13. Bovens, Luc, 2015. Child Euthanasia: Should We Just Not Talk about It? Journal of Medical Ethics. Aug; 41, 8: 630-4. DOI.org/10.1136/medethics-2014-102329.
  14. Brinkmann, Svend, 2013. Qualitative Interviewing. Understanding Qualitative Research. New York, NY: Oxford University Press.
  15. Bryman, Alan, 2012. Social Research Methods (4th ed). New York, NY: Oxford University Press.
  16. Butler, Ashleigh, Helen Hall & Beverley Copnell, 2016. A Guide to Writing a Qualitative Systematic Review Protocol to Enhance Evidence-based Practice in Nursing and Health Care. Worldviews Evidence Based Nursing, January 20. DOI.org/10.1111/wvn.12134.
  17. Carricaburu, Danièle, & Marie Ménoret [2005]2007. Sociologie de la santé. Traduzione italiana Sociologia della salute. Bologna: il Mulino.
  18. Carrol, Aaron, & Jennifer Buddenbau, 2007. Malpractice Claims Involving Pediatricians: Epidemiology and Etiology. Pediatrics, 120, 1: 10-7. DOI.org/10.1542/peds.2006-3618.
  19. Caselli, Marco, 2005. Indagare col questionario. Introduzione alla ricerca sociale di tipo standard. Milano: Vita e Pensiero.
  20. Chan, Benny, & Margaret Somerville, 2016. Converting the “Right to Life” to the “Right to Physician-assisted Suicide and Euthanasia”: An Analysis of Carter v. Canada (Attorney General), Supreme Court of Canada. Medical Law Review. Apr 19. pii: fww005.
  21. Cipriani, Roberto, 1996. La metodologia delle storie di vita. In Costantino Cipolla & Antonio De Lillo (cura di), Il sociologo e le sirene. La sfida dei metodi qualitativi. Milano: FrancoAngeli.
  22. —, 2001. L’analisi computer-assistita delle storie di vita. In Luca Ricolfi, La ricerca qualitativa. Roma: Carocci.
  23. Corbetta, Piergiorgio, 1999. Metodologie e tecniche della ricerca sociale. Bologna: il Mulino.
  24. Costa, Cecilia, 2008. Temi e problemi della complessità. Roma: Armando Editore.
  25. Costello, Michael, Daniel West & Bernardo Ramirez, 2014. End-of-life Decisions - Some International Comparisons. World Health & Population, 15, 2: 4-13. DOI.org/10.12927/whp.2014.2386.
  26. Creswell, John, 2009. Research Design: Qualitative, Quantitative and Mixed Methods Approaches (3rd ed.). London, UK - New York, NY - Thousand Oaks, CA: Sage Publications.
  27. Cuttini, Marina, Michela Nadai, Monique Kaminski, Gesine Hansen, Richard de Leeuw, Sylvie Lenoir, Jan Persson, Marisa Rebagliato, Margaret Reid, Umber-to de Vonderweid, Hans Lenard, Marcello Orzalesi & Rodolfo Saracci, 2000. End-of-life Decisions in Neonatal Intensive Care: Physician’s Self-reported Practices in Seven European Countries. EURONIC Study Group. Lancet, 355, 9221: 2112-8. DOI.org/10.1016/S0140-6736(00)02378-3.
  28. —, Veronica Casotto, Monique Kaminski, Inez de Beaufort, István Berbik, Gesine Hansen, Louis Kollée, Audrunas Kucinskas, Sylvie Lenoir, Adik Levin, Marcello Orzalesi, Jan Persson, Marisa Rebagliato, Margaret Reid & Rodolfo Saracci, 2004. Should Euthanasia Be Legal? An International Survey of Neo-natal Intensive Care Units Staff. Archives of Disease Childhood. Fetal and Neonatal Edition, 89, 1: F19-24. DOI.org/10.1136/fn.89.1.F19.
  29. —, Veronica Casotto, Umberto de Vonderweid, Micheline Garel, Louis Kollée, Rodolfo Saracci, & EURONIC Study Group, 2009. Neonatal End-of-life Decisions and Bioethical Perspectives. Early Human Development, 85, 10 Suppl: S21-25. DOI.org/10.1016/j.earlhumdev.2009.08.007.
  30. D’Agostino, Francesco, 1997. Bioetica: nella prospettiva della filosofia del diritto. Torino: Giappichelli.
  31. Dahrendorf, Ralf, 2006. Homo Sociologicus. Ein Versuch zur Geschichte, Bedeutung und Kritik der Kategorie der soziale Rolle. Wiesbaden: Verlag für Sozialwissenschaften.
  32. de Beaufort, Inez, & Suzanne van de Vathorst, 2016. Dementia and Assisted Suicide and Euthanasia. Journal of Neurology, March 26: 1-5. DOI.org/10.1007/s00415-016-8095-2.
  33. Deschepper, Reginald, Jan Bernheim, Robert Vander Stichele, Lieve van den Block, Eva Michiels, Greta van Der Kelen, Freddy Mortier & Luc Deliens, 2008. Truth-telling at the End of Life: A Pilot study on the Perspective of Patients and Professional Caregivers. Patient, Education and Counselling, 71, 1: 52-6. DOI.org/http://dx.DOI.org/10.1016/j.pec.2007.11.015.
  34. Deyaert, Jef, Kenneth Chambaere, Joachim Cohen, Marc Roelands, & Luc Deliens, 2014. Labelling of End-of-life Decisions by Physicians. Journal of Medical Ethics, 40, 7: 505-7. DOI.org/10.1136/medethics-2013-101854.
  35. Durkheim, Émile, 1950. Leçons de sociologie. Physique des mœurs et du droit. Cours de sociologie dispensés à Bordeaux entre 1890 et 1900. Paris: PUF. In http://classiques.uqac.ca/classiques/Durkheim_emile/lecons_de_sociologie/Lecons_socio.pdf (visitato il 123.7.2017).
  36. Eden, Lacey, & Lynn Clark Callister, 2010. Parent Involvement in End-of-life Care and Decision Making in the Newborn Intensive Care Unit: An Integrative Review. The Journal of Perinat Education, 19, 1: 29-39. DOI.org/10.1624/105812410X481546.
  37. Elliot, Jaklin, & Ian Olver, 2008. Choosing between Life and Death: Patient and Family Perceptions of the Decision Not to Resuscitate the Terminally Ill Cancer patient. Bioethics, 22, 3: 179-89. DOI.org/10.1111/j.1467-8519.2007.00620.x.
  38. Ferrando, Gilda, 2011. Fine vita e rifiuto di cure: profili civilistici. In Stefano Canestrari, Gilda Ferrando, Cosimo Marco Mazzoni, Stefano Rodotà & Paolo Zatti (a cura di), Trattato di biodiritto. Il governo del corpo. Tomo I. Milano: Giuffrè.
  39. Ferrarotti, Franco, 1998. Manuale di sociologia. Roma-Bari: Laterza.
  40. Flores d’Arcais, Paolo, 2009. A chi appartiene la tua vita. Milano: Ponte alle Grazie.
  41. Gesang, Bernward, 2008. Passive and Active Euthanasia: What Is the Difference? Medicine, Health Care and Philosophy, 11, 2: 175-80. DOI.org/10.1007/s11019-007-9087-x.
  42. Gets, Linn, Anna Luise Kirkengen, Irene Hettlevik, Solfrid Romundstad & Johann Sigurdsson, 2004. Ethical Dilemmas Arising from Implementation of the European Guidelines on Cardiovascular Disease Prevention in Clinical Practice. A descriptive Epidemiological Study. Scandinavian Journal of Primary Health Care, 22, 4: 202-8.
  43. Giorello, Giulio, & Umberto Veronesi, 2006. La libertà della vita. Milano: Raffaello Cortina.
  44. Glaser, Barney, & Anselm Strauss, 2012. The Discovery of Grounded Theory: Strategies for Qualitative Research. 7a ristampa. New Brunswich, NJ (USA) and London (UK): Aldine Transaction.
  45. Hui, David, Maxine De La Cruz, Masanori Mori, Henrique A. Parsons, Jung Hye Kwon, Isabel Torres-Vigil, Sun Hyun Kim, Rony Dev, Ronald Hutchins, Christiana Liem, Duck-Hee Kang, & Eduardo Bruera, 2013. Concepts and Definitions for “Supportive Care” “Best Supportive Care”, “Palliative Care”, and “Hospice Care” in the Published Literature, Dictionaries, and Textbooks. Support Care Cancer, 21, 3 :659-85. DOI.org/10.1007/s00520-012-1564-y.
  46. ISTAT, 2014. La mortalità dei bambini ieri e oggi in Italia. Anni 1887-2011. In www.istat.it (visitato il 13.7.2017).
  47. Kamm, Frances, 2002. Rights. In Jules Coleman & Scott Shapiro (eds.), The Ox-ford Handbook of Jurisprudence and Philosophy of Law. New York, NY: Ox-ford University Press.
  48. Katz, Jack, 1988. A Theory of Qualitative Methodology: The Social System of Analytic Fieldwork. In Robert Emerson (ed.), Contemporary Field Research. Prospect Heights, IL: Waveland Press.
  49. King, Nigel, & Christine Horrocks, 2010. Interviews in Qualitative Research. Lon-don, UK - New York, NY - London, UK New York, NY - Thousand Oaks, CA: Sage Publications.
  50. Küng, Hans, [2014]2015. Glücklich sterben?. Traduzione italiana Morire felici? Lasciare la vita senza paura. Milano: Rizzoli.
  51. Löfmark, Rurik, Tore Nilstun, Colleen Cartwright, Susanne Fischer, Agnes van der Heide, Freddy Mortier, Michael Norup, Lorenzo Simonato, Bregje Onwuteaka-Philipsen, & the EURELD Consortium, 2008. Physician’s Experi-ences with End-of-life Decision-making: Survey in 6 European Countries and Australia, in BioMed Central Medicine, 6, 1: 4. DOI.org/10.1186/1741-7015-6-4.
  52. Magni, Sergio Filippo, & Armando Massarenti, 2010. Etica ed esercizio della medicina. In Alessandro Pagnini (a cura di), Filosofia della medicina. Epistemologia, ontologia, etica diritto. Roma: Carocci.
  53. Mantovani, Ferrando, 2012. Autodeterminazione e diritto penale. In Francesco D’Agostino, (a cura di), Autodeterminazione. Un diritto di spessore costituzionale?. Milano: Giuffrè.
  54. Marino, Ignazio, 2005. Credere e curare. Torino: Einaudi.
  55. Marradi, Alberto, 1996. Due famiglie e un insieme. In Costantino Cipolla & Antonio De Lillo (a cura di), Il sociologo e le sirene. La sfida dei metodi qualitativi. Milano: FrancoAngeli.
  56. Materstvedt, Lars Johan, David Clark, John Ellershaw, Reidun Førde, Anne-Marie Gravgaard, Hans-Christof Müller-Busch, Josep Porta-Sales, Charles-Henry Rapin, & EAPC Ethics Task Force, 2003. Euthanasia and Physician-assisted Suicide: a View from an EAPC Ethics Task Force. Palliative Medicine, 17, 2: 97-101.
  57. McAbee, Gary, Steven Donn, Robert Mendelson, William McDonnell, Jose Gonzalez & Julie Kersten Ake, 2008. Medical Diagnoses Commonly Associated with Pediatric Malpractice Lawsuits in the United States. Pediatrics, 122, 6: e1282-6. DOI.org/10.1542/peds.2008-1594.
  58. Memoli, Rosanna, 2004. Strategie e strumenti della ricerca sociale. Milano: FrancoAngeli.
  59. Mendes, Joana, & Lincoln Justo da Silva, 2013. Neonatal Palliative Care: Developing Consensus among Neonatologists Using the Delphi Technique in Portugal. Advances in Neonatal Care, 13, 6: 408-14. DOI.org/10.1097/ANC.0000000000000037.
  60. Merton, Robert King [1949]2000. Social Theory and Social Structure. Traduzione italiana Teoria e struttura sociale. I. Teoria sociologica. Bologna: il Mulino.
  61. —, Marjorie Fiske & Patricia Kendall, 1990. The Focused Interview. A Manual of Problems and Procedures (2nd ed.) New York, NY: The Free Press.
  62. Montesperelli, Paolo, 1998. L’intervista ermeneutica. Milano: FrancoAngeli.
  63. Mori, Maurizio, 2008. Il caso Eluana Englaro. La “Porta Pia” del vitalismo ippocratico, ovvero perché è moralmente giusto sospendere ogni intervento. Bologna: Edizioni Pendragon.
  64. Moro, Teresa, Karen Kavanaugh, Susan Okuno-Jones & Jody Vankleef, 2006. Neonatal End-of-life Care: A Review of the Research Literature. Journal of Perinat & Neonatal Nursing, 20, 3: 262-73.
  65. Muckart, David, Deepa Gopalan, Timothy Hardcastle & Eric Hodgson, 2014. Palliative Care: Definition of Euthanasia. South African Medical Journal, 104, 4: 259-60.
  66. Nagy Hesse-Biber Sharlene, & Patricia Leavy, 2011. The Practice of Qualitative Research (2nd ed.) London, UK - New York, NY - Thousand Oaks, CA: Sage Publications.
  67. Neresini, Federico, 2006. Bioetica, medicina e società. In Massimiano Bucchi & Federico Neresini (a cura di), Sociologia della salute. Roma: Carocci.
  68. Orzalesi Marcello & Marina Cuttini, 2011. Ethical Issues in Neonatal Intensive Care. Annali dell’Istituto Superiore di Sanità, 47 3: 273-7. DOI.org/10.4415/ANN_11_03_06.
  69. Paci, Eugenio, & Guido Miccinesi, 2008. Come si muore in Italia. Lo studio ITAELD-FNOMCEO. La Professione. Medicina, Scienza, Etica e Società. I Quaderni, 1: 107-19.
  70. Palumbo, Mauro, & Elisabetta Garbarino, 2006. Ricerca sociale: metodo e tecniche. Milano: FrancoAngeli.
  71. Rawls, John, [1971]1982. A Theory of Justice. Traduzione italiana Una teoria della giustizia. Milano: Feltrinelli.
  72. Razzano, Michela, 2014. Dignità nel morire, eutanasia e cure palliative nella prospettiva costituzionale. Torino: Giappichelli.
  73. Rebagliato, Marisa, Marina Cuttini, Lara Broggin, István Berbik, Umberto de Vonderweid, Gesine Hansen, Monique Kaminski, Louis A. A. Kollée, Au-drũnas Kucinskas, Sylvie Lenoir, Adik Levin, Jan Persson, Margaret Reid, Rodolfo Saracci, & 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, 284, 19: 2451-9. DOI.org/10.1001/jama.284.19.2451.
  74. Ricciardi, Mario, 2010. La deontologia professionale del medico. In Alessandro Pagnini (a cura di), Filosofia della medicina. Epistemologia, ontologia, etica diritto. Roma: Carocci.
  75. Rodotà, Stefano, 2012. Il diritto di avere diritti. Roma-Bari: Laterza.
  76. —, 2014. Perché i diritti non sono un lusso in tempo di crisi. La Repubblica, 20 ottobre.
  77. Sala, Valeria, Lorenzo Moja, Ivan Moschetti, Sabrina Bidoli, Vanna Pistotti & Alessandro Liberati, 2006. Revisioni sistematiche. Centro Cochrane Italiano. In www.cochrane.it (visitato il 13.7.2017).
  78. Saldana, Johnny, 2011. Fundamentals of Qualitative Research. New York, NY: Oxford University Press.
  79. Siwek, Jay, 2002. Writing Evidence-based Clinical Reviews. American Family Physician, 65, 2: 175.
  80. Social and Behavioural Research Ethics Committee (2007). Ethical Guidelines for Social and Behavioural Research. In http://gametlibrary.worldbank.org/FILES/1504_Ethical%20Guidelines%20for%20Behaviorual%20Research.pdf (visitato il 12.7.2017).
  81. Steinhauser, Karen, Nicholas Christakis, Elizabeth Clipp, Maya McNeilly, Lauren McIntyre, & James Tulsky, 2000. Factors Considered Important at the End of Life by Patients, Family, Physicians, and Other Care Providers. JAMA, 284, 19: 2476-82. DOI.org/10.1001/jama.284.19.2476.
  82. Trappe, Hans-Joachim, 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, Nov 17: 1-7. DOI.org/10.1007/s00063-015-0119-7.
  83. Trobia, Alberto, 2005. La ricerca sociale quali-quantitativa. Milano: FrancoAngeli.
  84. Vardanega, Agnese, 2008. L’analisi dei dati qualitativi con Atlas.ti. Fare ricerca sociale con i dati testuali. Roma: Aracne Editrice.
  85. Verhagen, Eduard, 2008. È uccidere o prendersi cura. Micromega, 1, suppl: 72-6.
  86. —, Mark van der Hoeven, Corine van Meerveld & Pieter Sauer, 2007. Physician Medical Decision-making at the End of Life in Newborns: Insight into Implementation at 2 Dutch Centers. Pediatrics, 120, 1: e20-e28. DOI.org/10.1542/peds.2006-2555.
  87. —, & Pieter Sauer, 2005. The Groningen Protocol - Euthanasia in Severely Ill Newborns. The New England Journal of Medicine, 352, 10: 959-62. DOI.org/10.1056/NEJMp058026.
  88. Veronesi, Umberto, 2005. Il diritto di morire. La libertà del laico di fronte alla sofferenza. Milano: Mondadori.
  89. Weber, Max [1922]2010. R. Stammlers “Überwindung” der materialistischen Geschichtsauffassung. In Max Weber, Gesammelte Aufsätze zur Wissenschafts-lehre. Traduzione italiana A proposito di “Economia e diritto” di Rudolf Stammler. In Alberto Febbrajo (a cura di), Verso un concetto sociologico del diritto. Milano: Giuffrè.
  90. Willems, Dick, Eduard Verhagen, Eric van Wijlick, & 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, 134, 4: e1163-8. DOI.ORG/10.1542/peds.2014-0780.
  91. Williamson, Robin Charles, 2001. How to Write a Review Article. Hospital Medicine, 62, 12: 780-2.
  92. WHO, 2011. Palliative Care for Older People: Better Practices. In www.euro.who.int/__data/assets/pdf_file/0017/143153/e95052.pdf (visitato il 13.7.2017).
  93. —, 2015. Palliative Care. In www.who.int/mediacentre/factsheets/fs402/en/.
  94. Zagrebelsky, Gustavo, 2009. Contro l’etica della verità. Roma-Bari: Laterza.

Carmelo Guarino, Fine vita in neonatologia. Una ricerca qualitativa in "SOCIOLOGIA DEL DIRITTO " 3/2017, pp 127-152, DOI: 10.3280/SD2017-003006