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06 f ventriglia problematiche etiche in ecocardiografia fetale in italia

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06 f ventriglia problematiche etiche in ecocardiografia fetale in italia

  1. 1. Flavia Ventriglia U.O.C. Cardiologia Pediatrica “Sapienza” Università di Roma
  2. 2. QUALE E’ L’IMPATTO DELLA DIAGNOSTICA PRENATALE  In generale la DIAGNOSI costituisce il primo indispensabile passo per un successivo intervento medico A FAVORE del paziente  Quando però la diagnosi varca la soglia del mistero della vita e della nascita pone di fronte ad importanti problemi ETICI e PSICOLOGI.  Se una diagnosi di patologia grave viene effettuata prima della 23° settimana di EG può portare ad una decisione di IVG  In tutti i casi la famiglia subisce un grave trauma per il crollo delle aspettative su un figlio desiderato e si innesca l’ansia per quello a cui si andrà incontro fino al momento della sua nascita e durante la sua crescita
  3. 3. …quando cambia una vocale… FETAL ECHOCARDIOGRAPHY FATAL ECHOCARDIOGRAPHY Maurice Guirgis - Paris
  4. 4. La TEMPISTICA  L’ecografia morfologica si effettua solitamente intorno alla 21 a settimana di EG, l’ecocardiografia fetale di solito successivamente ad essa  IVG in Italia entro le 22 sett più 6 gg  Non c’è tempo per fare ulteriori approfondimenti diagnostici, per pianificare un reale supporto psicologico, per consultare tutti i possibili attori che si occuperanno della patologia del bambino: ostetrico, neonatologo, cardiologo, cardiochirurgo  Diventa una corsa contro il tempo che non lascia nemmeno spazio ad una seria riflessione sulle scelte da fare e a far emergere i veri sentimenti della coppia
  5. 5. PROBLEMI ETICI  Non ci sono problematiche etiche se nel momento del counselling si offre un chiaro e comprensibile quadro della patologia  Si spiega le possibilità ed i limiti di previsione della diagnostica prenatale su alcune patologie, soprattutto quelle evolutive (es. patologie ostruttive sn)  Si chiarisce a cosa andrà incontro quel bambino allo stato attuale delle possibilità terapeutiche mediche e chirurgiche locali  Si ha un rapporto empatico con la coppia senza farsi coinvolgere nella loro decisione circa il management
  6. 6. Diversi Approcci Bioetici Nostro approccio etico: prospettiva antropologica – visione umanistica Passare dal “To Cure” al “TO CARE”, ..qualsiasi scelta faccia la coppia non si deve sentire abbandonata, solo così si può condurre la famiglia a fare SCELTE LIBERE ETICA ANGLOSASSONE (??) “IF YOU ARE UNABLE TO DISCUSS ABOUT TERMINATE OF PREGNANCY DON’T DO FETAL ECHO” L.ALLAN
  7. 7. …To Care  “Prendersi cura” della madre, del padre e del feto  “Prendersi cura” di ogni aspetto dell’esame ecocardiografico: dall’accoglienza della coppia nella stanza dove si effettua l’esame, alla modalità con cui si effettua l’esame nel rispetto delle persone, alla comunicazione della diagnosi e delle prospettive terapeutiche  Valutare la diversità delle situazioni cliniche se la diagnosi avviene prima o dopo la 23a settimana di EG  Non avere l’atteggiamento classico della “medicina difensiva”…uno dei più importanti attuali problemi
  8. 8. …To Care Diagnosi prima della 23a settimana: • Spiegare in termini chiari e semplici con schemi l’anatomia e la fisiopatologia della cardiopatia • Valutare le sue possibilità evolutive • Spiegare le possibilità terapeutiche con casistiche aggiornate del centro di riferimento cardiochirurgico e come avverranno il parto e le prime cure • Considerare la possibilità dell’IVG
  9. 9. …To Care Diagnosi dopo la 23a settimana e/o se la coppia continua la gravidanza • I primi tre punti • Tranquillizzare la coppia che non sarà abbandonata! • …che sarà fatto tutto il possibile per la tutela della salute della madre e del feto e poi del bambino
  10. 10. …To Care  Gestire i controlli ecocardiografici, programmandoli insieme a quelli ostetrici  Ribadire ad ogni controllo la disponibilità a fornire nuove spiegazioni  Pianificare il parto, il management post-natale ed essere presenti in sala parto  E poi ..il supporto psicologico ..la coppia è in un momento di fragilità emotiva
  11. 11. …To Care  Progetto con i colleghi psicologi dell’ Associazione Alma Salus  UNA CULLA DI EMOZIONI…. Omaggio della nonna di Ettore: Vsn “borderline” - CoAo severa
  12. 12. L’abbraccio alle coppie genitoriali Il nostro intervento prevede:  1^ FASE: incontro conoscitivo dove la coppia viene accolta e si raccolgono le prime informazioni sulle risorse e sulla rete familiare  2^FASE: affiancare il medico durante la visita e supportarlo nella delicata comunicazione della diagnosi e della prognosi di cardiopatia congenita  3^ FASE: fornire supporto psicologico in situazioni di emergenza, offrendo 3 incontri alla coppia genitoriale per gestire le forti emozioni ed elaborare insieme ciò che li sta “travolgendo”  4^ FASE: condivisione e confronto con il medico
  13. 13. …To Care • …è possibile andare ancora oltre nell’AVER CURA DI…..superare le frontiere?? “HEAVEN CAN BE WAIT !!!!”  Progetto internazionale: Prof. Guirgis Prof. Squarcia…. Prof.ssa Ventriglia….e…

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