The authors reply
Os autores respondem
The debaters raise important current questions regarding the role of healthcare professionals and the State vis-à-vis pregnant women and their families after an adverse diagnosis. In this article, we highlight the frequent difficulty of professionals in dealing with the issue, especially those who receive a diagnosis of fetal malformations. In addition to this, Elizabeth stresses in an interesting manner that the announcement of bad news does not involve only the physician and the patient, but also all of the family members involved with the pregnancy. This fact places the pregnant woman at center stage in a denouement that presupposes communication between the several actors in their respective roles in the scene, and consequently in decision-making relating to the pregnancy and the fetus.
The importance of being prepared for unfavorable situations and being trained to deal with them should be emphasized to the professionals responsible for prenatal diagnosis, since access to such diagnosis is through laboratory tests or ultrasound images, news of which spreads rapidly throughout the collective group. If the professionals are unprepared, they may run the risk of causing harm to patients by omission or misconduct. We should stress that good technical knowledge, despite being essential, should be associated with the perception of the context in which the patient finds herself, both in individual and family terms. Understanding the state of preparedness to assimilate the bad news and perceiving that the dimension of a potential tragedy is private and unique in nature should be fundamental for these professionals in such situations.
It is at this exact juncture, as Ludmila rightly points out, that current medical practices which are based on reason and technique come into conflict with the nuances existing in the communication of an adverse prenatal diagnosis. The debater highlights the plight in which many Brazilian women find themselves when they receive the information about the diagnosis of a fetal malformation, either because of highly technical and impersonal medical terminology, or due to legal restrictions on abortion. The fact is that, the prenatal diagnosis of congenital anomalies is increasingly disseminated in Brazil, but in a rather perverse scenario when one considers the absence of universal access to good quality prenatal diagnosis, the lack of professional training to deal with adverse situations and the existence of extremely restrictive abortion laws. One might even question the ethical aspects of passing on the diagnosis of fetal malformations without there being the option of abortion1.
We agree that comprehensive healthcare for women should take into account the various contexts in which they find themselves. Despite having advanced greatly in favor of more equitable public health2, one might well ask: How many women have ultrasound tests during prenatal care in the public health system, and how many do so in private centers? As regards the promotion of education: Are women acquiring greater autonomy with respect to their own reproductive health? It therefore seems to us that there is a clear need to organize and ensure the access of public health patients to better quality prenatal diagnosis. To achieve this, we propose the formulation of public policies aimed at setting up prenatal diagnosis centers, in networks tailored to the regional demands of the area, for promoting access to tests and consultations. The physical and technological structure of these centers, as well as the qualification of the professionals working in them, should also be ensured.
Specifically on the communication of bad news, we add some key points to be taken into consideration by those professionals involved in the context: set aside sufficient time for the consultation: think carefully about the words to be used; study the subject before speaking; adapt the information to the reality of each person; maintain hope for a way out of the situation; respect and contribute to the autonomy of women; share responsibilities with other professionals; encourage care by the family; contribute to the organization of the local healthcare network and promote the professional teaching of humanized care and research on the subject by the social sciences.
We thank the debaters for the comments made on this article, the theme of which will receive ever increasing attention in Brazil's advance toward better quality prenatal care.
1. Ballantyne A, Newson A, Luna F, Ashcroft R. Prenatal diagnosis and abortion for congenital abnormalities: is it ethical to provide one without the other? Am J Bioeth 2009; 9(8):48-56.
2. Guanais FC. Health equity in Brazil. BMJ 2010; 341: 6542.