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Advisor(s)
Abstract(s)
Introdução: A relação médico-doente em Procriação Medicamente Assistida
(PMA) tem particularidades que a tornam única no universo da Medicina: as decisões têm
que ser tomadas por um casal, relativamente a eles próprios, a um futuro ser que se procura
criar neste contexto, e a eventuais embriões excedentários; pode haver participação de
elementos estranhos ao casal, cuja autonomia é também de considerar; o médico pode nem
sempre estar disponível para avançar por caminhos que a ciência permite e a lei não proíbe,
mas que a sua consciência lhe pode vedar. Da prática clínica diária na área da PMA, aliada
a uma preocupação crescente sobre as questões éticas que ela nos coloca, surgiram as
questões de investigação: serão os candidatos a PMA verdadeiramente autónomos nas
decisões que tomam? Será que ao exercerem determinadas escolhas estarão preparados
para assumir a responsabilidade inerente às mesmas? A avaliação do binómio autonomiaresponsabilidade
nos casais que recorrem à PMA constituiu então o objetivo deste estudo.
Métodos: Após uma revisão teórica inicial, abordando os conceitos de autonomia
e responsabilidade, aplicando-os à relação médico-doente, e em seguida à área médica
específica da PMA, realizou-se um estudo empírico, multicêntrico, em que através de um
questionário anónimo, enviado a 932 casais com embriões criopreservados, se procurou
investigar as decisões tomadas relativamente aos embriões, os fatores que influenciam
essas decisões, e o grau de dificuldade apresentado na tomada das mesmas. Resultados: De entre os 328 participantes que devolveram o questionário, 35% não pretendiam transferir os embriões criopreservados num novo ciclo, a maioria por já ter completado a família; de entre os 136 que não pretendiam transferir os embriões num futuro próximo, o destino preferencialmente escolhido foi a doação para investigação (47%). Só em 2% dos casais os dois elementos se encontravam em desacordo e 25% do total dos participantes ainda não tinha conseguido tomar uma decisão. Foi significativamente mais fácil tomar decisões no grupo tratado a partir de 2009, após entrada em vigor do formulário oficial de consentimento informado, utilizado por todos os centros desde então.
Conclusões: A relevância deste estudo prende-se com o seu caráter multicêntrico, casuística importante e pioneirismo em Portugal. Permite constatar que apesar de a regulamentação da PMA não ter sido antecedida de debate público, não existem discrepâncias significativas entre o conteúdo da mesma e as atitudes dos casais face aos seus embriões criopreservados. Verificamos, com agrado, que a implementação generalizada dos formulários oficiais de consentimento informado facilitou de forma significativa a tomada de decisão; contudo, constatamos com apreensão a existência de um elevado número de indecisos, que adiam até ao limite a expressão da sua autonomia, e se sentem incapazes de assumir a responsabilidade que se lhes exige. Há, portanto, um ainda longo caminho a percorrer: é necessário incluir no diálogo médico-doente, para além dos aspectos técnico-científicos e legais, a necessária reflexão ética, de forma a ajudar as pessoas a reconhecerem os seus próprios valores, a decidirem de acordo com os mesmos, e assim poderem exercer a sua autonomia, de uma forma não apenas jurídica mas moral, e assumir plenamente a responsabilidade decorrente das suas decisões.
Background: The doctor-patient relation while using Assisted Reproductive Techniques (ART) has some particularities which make it unique in the Medicine world. Decisions have to be made by a couple, and they must take into account not only themselves and their own interests, but also the future human being they want to conceive, and any surplus embryos they may create during the procedure. Besides, third parties can participate in the treatment, so their autonomy has also to be considered. Finally, the physician may not always be willing to go through paths that, although allowed by science and not prohibited by law, are not accepted by his conscience. The daily clinical practice in the area of ART, combined with a growing concern about its ethical issues, gave rise to the research questions: are the ART candidates truly autonomous in the decision-making process? Are they able to take the responsibility inherent to their choices? The main goal of this study is, therefore, the evaluation of the autonomy-responsibility binomial in couples undergoing ART. Methods: An initial theoretical review has been made, addressing the concepts of autonomy and responsibility, applying them to the doctor-patient relation, and then to the specific area of ART. Afterwards, an empirical multicentric study was performed, by sending an anonymous questionnaire to 932 couples with frozen embryos. Its aim was to investigate couples’ decisions concerning their embryos, the factors influencing their choices and the distress caused while making their resolutions. Results: Among the 328 participants that answered the questionnaire, 35% did not intend to transfer the frozen embryos into another cycle, most because they had already completed their family; among the 136 who did not intend to transfer the embryos in a near future, the main preference was to donate them for research (47%). Only 2% of the couples both partners disagreed about what to do with the frozen embryos, and 25% had not made a decision yet. It has been significantly easier to make decisions in the group treated from 2009 onwards, after the entry into force of the official form of informed consent, used by all centres since then. Conclusions: The relevance of this study lies on its multicentric feature, numerous case studies and leading edge in Portugal. Although the ART regulation was not preceded by public debate, we can conclude that there were not significant discrepancies between its contents and the couples’ attitudes towards their cryopreserved embryos. We can conclude with pleasure that the widespread implementation of the official forms of informed consent significantly facilitated decision-making. However, we must take into account the high number of people who still have not made a decision yet, who postpone until the last minute the expression of their autonomy and feel unable to take the responsibility that is inherent to ART. There is, therefore, a long way to go: it is necessary to include in the doctor-patient dialogue, beyond the technical-scientific and legal issues, the ethical reflection. In this way, we can help people in recognizing their own values, to decide according to them, so that they will be able to perform their autonomy in a way not only legal, but also moral, and wisely assume responsibility for their decisions.
Background: The doctor-patient relation while using Assisted Reproductive Techniques (ART) has some particularities which make it unique in the Medicine world. Decisions have to be made by a couple, and they must take into account not only themselves and their own interests, but also the future human being they want to conceive, and any surplus embryos they may create during the procedure. Besides, third parties can participate in the treatment, so their autonomy has also to be considered. Finally, the physician may not always be willing to go through paths that, although allowed by science and not prohibited by law, are not accepted by his conscience. The daily clinical practice in the area of ART, combined with a growing concern about its ethical issues, gave rise to the research questions: are the ART candidates truly autonomous in the decision-making process? Are they able to take the responsibility inherent to their choices? The main goal of this study is, therefore, the evaluation of the autonomy-responsibility binomial in couples undergoing ART. Methods: An initial theoretical review has been made, addressing the concepts of autonomy and responsibility, applying them to the doctor-patient relation, and then to the specific area of ART. Afterwards, an empirical multicentric study was performed, by sending an anonymous questionnaire to 932 couples with frozen embryos. Its aim was to investigate couples’ decisions concerning their embryos, the factors influencing their choices and the distress caused while making their resolutions. Results: Among the 328 participants that answered the questionnaire, 35% did not intend to transfer the frozen embryos into another cycle, most because they had already completed their family; among the 136 who did not intend to transfer the embryos in a near future, the main preference was to donate them for research (47%). Only 2% of the couples both partners disagreed about what to do with the frozen embryos, and 25% had not made a decision yet. It has been significantly easier to make decisions in the group treated from 2009 onwards, after the entry into force of the official form of informed consent, used by all centres since then. Conclusions: The relevance of this study lies on its multicentric feature, numerous case studies and leading edge in Portugal. Although the ART regulation was not preceded by public debate, we can conclude that there were not significant discrepancies between its contents and the couples’ attitudes towards their cryopreserved embryos. We can conclude with pleasure that the widespread implementation of the official forms of informed consent significantly facilitated decision-making. However, we must take into account the high number of people who still have not made a decision yet, who postpone until the last minute the expression of their autonomy and feel unable to take the responsibility that is inherent to ART. There is, therefore, a long way to go: it is necessary to include in the doctor-patient dialogue, beyond the technical-scientific and legal issues, the ethical reflection. In this way, we can help people in recognizing their own values, to decide according to them, so that they will be able to perform their autonomy in a way not only legal, but also moral, and wisely assume responsibility for their decisions.