Devolución de resultados de necropsias en la Unidad de Cuidados Intensivos de Niños del Centro Hospitalario Pereira Rossell: 1ª experiencia nacional-estudio cualitativo

Marta Alberti; Rosario Lores

Authors

Marta Alberti Universidad de la República, Facultad de Medicina, Hospital Pereira Rossell, Unidad de Cuidados Intensivos de Niños, Cátedra de Pediatría Intensiva. Ex Directora
Rosario Lores Universidad de la República, Facultad de Medicina, Unidad Académica de Bioética. Prof. Adj. Centro Hospitalario Pereira Rossell, Unidad de Cuidados Intensivos de Niños. Psicóloga

Keywords:

AUTOPSY, PEDIATRIC INTENSIVE CARE UNITS, PROFESSIONAL-FAMILY RELATIONS

Abstract

Introduction: traditionally, autopsies in the pediatric context have focused on how they are requested, rather than on reporting results to parents. In 2004 autopsies requests were included in the protocols at the Intensive Care Unit (ICU).
Objective: we aimed to conduct a qualitative research to study the way autopsies results are reported back to parents. The objective was to evaluate the information arising from autopsies as a new way to relate with families.
Method: we reported autopsy results in a personalized and systematic way to parents and we recorded interviews, with their prior consent, in order to analyse them subsequently. We based our study on the Glaser and Straus grounded theory method, a method used to find out theories, concepts, and hypothesis originating from data rather than on a priori assumptions.TO that end, two strategies are applied: constant comparison and theoretical sampling. The sample ends when no more data that contributes to the object of study arises.
Results: 3,879 patients were released from the ICU from January, 2005 through December, 2009, 215 of which died, representing a 5.5% mortality rate. Judicial autopsies was carried out in 42 cases and in 98% of the remaining deceased, the authorization to perform the autopsy was requested. Autopsy was authorized in 54 cases and it was performed in 52 cases. Results were reported to relatives in 48 cases. In two cases the treating physician was informed about results, in one case it was the institution and in one case there was no reporting of results.
Discussion: in terms of results, we stand out two findings: the structure the interview should follow and the categories defined in connection with the parents' needs when facing the interview.
Last, the bioethical perspective of the information given to parents was analysed.

References

(1) Douglas M. Cómo piensan las instituciones. Madrid: Alianza, 1996.
(2) Romero Gorski S. Cambios en la profesión médica. Cuad CES 2009; 5: 35-45.
(3) Stambouly JJ, Kahn E, Boxer RA. Correlation between clinical diagnosis and autopsy findins in critically Ill children. Pediatrics 1993; 92(2):248-51.
(4) Riggs D, Weibley RE. Necropsia y unidad de cuidados intensivos pediátricos. Clin Pediatr NA 1994; 6: 1363-72.
(5) Goldstein B, Metlay L, Cox C, Rubenstein JS. Association of pre mortem diagnosis and autopsy findings in pediatric intensive care versus emergency department versus ward patients. Crit Care Med 1996; 24(4):683-6.
(6) Castellanos Ortega A, Ortiz Melón F, García Fuentes M, Prieto Valderrey F, Santidrián Miguel JP, Mazorra Macho F. Evaluación de la autopsia en la Unidad de Cuidados Intensivos Pediátricos. An Esp Pediatr 1997; 46(3):224-8.
(7) Kumar P, Taxy J, Angst DB, Mangurten HH. Autopsies in children: are they still useful? Arch Pediatr Adolesc Med 1998; 152(6):558-63.
(8) Ramírez M, Donoso A, Vildoso M, Valverde C, Clavería C, Hernández J, et al. Valor del estudio anatomopatológico en cuidados intensivos pediátricos. Rev Chil Pediatr 2000; 71(6):491-6.
(9) Shojania KG, Burton EC, McDonald KM, Goldman L. The Autopsy as an Outcome and Performance Measure. Evidence Report/Technology Assessment No. 58 (Prepared by the University of California at San Francisco-Stanford Evidence-based Practice Center under Contract No. 290-97-0013). AHRQ Publication No. 03-E002. Rockville, MD: Agency for Healthcare Research and Quality, 2002. Disponible en: http://archive.ahrq.gov/downloads/pub/evidence/pdf/autopsy/autopsy.pdf Consulta: 10 febrero 2010
(10) Cardoso MP, Bourguignon DC, Gomes MM, Saldiva PH, Pereira CR, Troster EJ. Comparison between clinical diagnosis and autopsy findings in a pediatric intensive care unit in São Paulo, Brazil. Pediatr Crit Care Med 2006; 7(5):423-7.
(11) Goldman L, Sayson R, Robbins S, Cohn LH, Bettmann M, Weisberg M. The value of the autopsy in three medical areas. NEJM 1983; 308(17):1000-5.
(12) Fernández A, Rodríguez A, Sosa G, Palenzuela S, Beltramo P, Gutiérrez C, et al. El valor de la autopsia en una unidad de cuidados intensivos pediátricos. Arch Pediatr Urug 2006; 77(2):103-9.
(13) Narayanan A, Thorburn K, Baines P. Autopsies in children continue to reveal unanticipated discrepancies between autopsy findings and antemortem clinical diagnoses. Arch Dis Child 2009; 94(8):645.
(14) Taylor SJ, Bodgan R. Introducción a los métodos cualitativos de investigación: la búsqueda de significados. Barcelona: Paidós, 1987.
(15) Glaser BG, Strauss AL. The discovery of Grounded Theory: strategies for qualittive research. Chicago: Aldine, 1967.
(16) Hirsch CS. Talking to the family after an autopsy. Arch Pathol Lab Med 1984; 108(6):513-4.
(17) Keys E, Brownlee C, Ruff M, Baxter C, Steele L, Green FH. How well do we communicate autopsy findings to next of kin? Arch Pathol Lab Med 2008; 132(1):66-71.
(18) Gracia D. Ética de los confines de la vida. Santa Fe de Bogotá, Colombia: El Búho, 1996. p. 331-43.