¿De qué trata nuestra investigación?
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Las familias juegan un papel fundamental en la donación de órganos de personas fallecidas. Sin embargo, se hace necesario clarificar en qué consiste ese papel, ya que en ocasiones, la familia es la única fuente de información cuando no se conocen los deseos del fallecido, mientras que en otros casos la familia puede decidir incluso en contra de los deseos expresados en vida por la persona fallecida. Debido a este amplio rango de capacidad decisional de la familia, en esta línea de investigación perseguimos:
a) Proporcionar un modelo analítico sistemático de los diferentes roles que puede desempeñar la familia en la toma de decisiones para la donación de órganos. b) Abordar la diferencias que se dan entre la legislación y la práctica en lo relativo al rol de la familia, y comparar estas diferencias entre países. c) Analizar los problemas éticos derivados de la participación de la familia en la toma de decisiones sobre donación de órganos, en relación diferentes aspectos de la autonomía, confianza en el sistema de trasplantes, etc. d) Explorar el conocimiento, las actitudes y las preferencias de la ciudadanía con respecto al papel que la familia tiene de hecho, y al que debería tener. |
Autores/as
Janet Delgado-Rodríguez Alberto Molina-Pérez David Rodríguez-Arias |
Adapted from:
- DELGADO J, MOLINA-PEREZ A, SHAW D, RODRÍGUEZ-ARIAS D (2019), The role of the family in deceased organ procurement. A guide for clinicians and policy makers. Transplantation, Vol. 103, No. 5, May 2019
- MORLA M, MOYA GUILLEM C, RODRIGUEZ-ARIAS D, de MIGUEL BERIAIN I, MOLINA-PEREZ A, ORTEGA-DEBALLON I, European and comparative law study regarding family's legal role in deceased organ procurement. Revista General de Derecho Público Comparado (accepted)
L0: Family has no role
Level 0 (L0) describes situations where the family is not given the opportunity to be involved in the decision- making process. Relatives are not consulted and play no role at all, although they might be kept informed about what is going to be done with the organs.
L1: Family acts as mere witness
Level 1 (L1) describes situations where the family is just expected or allowed to communicate the witnessed wishes of the deceased, nothing more. Doctors may or may not know the preferences of the deceased. In the first case, the next of kin may still be approached to update the record to seek whether the person had changed his or her mind before death. In the second case, the family is asked to provide that information, if they have it. In either case, the family has no decisional capacity. It is the medical team who decides.
L2: Family acts as surrogate
Level 2 (L2) reflects greater implication of the family in the decision-making process. In addition to acting as witness of the deceased’s wishes, if any, the family can reverse the default course of action defined by the consent system if no wishes have been expressed. In opt-out countries, they can oppose organ removal, whereas in opt-in countries, they can authorize it. The family can decide either according to what they believe the deceased can have wished or according to their own views. Whenever the deceased had expressed their preferences during their lifetime, either in favor or against donation, the family has not such decisional capacity.
L3: Family has full decisional authority
Level 3 (L3) describes the highest degree of decisional capacity relatives can have in the organ procurement decision-making process. As in L2, the family is consulted to make a decision if the preferences of the deceased are unknown to the medical team, and the family cannot provide any information. The distinction from L2 is that the family can also overrule the consent or refusal expressed by the deceased. However, it is very unlikely that any consent system would allow the family to override a refusal, for it is contrary to current inter- national laws and guidelines.
(Delgado et al 2019)
Level 0 (L0) describes situations where the family is not given the opportunity to be involved in the decision- making process. Relatives are not consulted and play no role at all, although they might be kept informed about what is going to be done with the organs.
L1: Family acts as mere witness
Level 1 (L1) describes situations where the family is just expected or allowed to communicate the witnessed wishes of the deceased, nothing more. Doctors may or may not know the preferences of the deceased. In the first case, the next of kin may still be approached to update the record to seek whether the person had changed his or her mind before death. In the second case, the family is asked to provide that information, if they have it. In either case, the family has no decisional capacity. It is the medical team who decides.
L2: Family acts as surrogate
Level 2 (L2) reflects greater implication of the family in the decision-making process. In addition to acting as witness of the deceased’s wishes, if any, the family can reverse the default course of action defined by the consent system if no wishes have been expressed. In opt-out countries, they can oppose organ removal, whereas in opt-in countries, they can authorize it. The family can decide either according to what they believe the deceased can have wished or according to their own views. Whenever the deceased had expressed their preferences during their lifetime, either in favor or against donation, the family has not such decisional capacity.
L3: Family has full decisional authority
Level 3 (L3) describes the highest degree of decisional capacity relatives can have in the organ procurement decision-making process. As in L2, the family is consulted to make a decision if the preferences of the deceased are unknown to the medical team, and the family cannot provide any information. The distinction from L2 is that the family can also overrule the consent or refusal expressed by the deceased. However, it is very unlikely that any consent system would allow the family to override a refusal, for it is contrary to current inter- national laws and guidelines.
(Delgado et al 2019)
