In the case of pregnant mothers with an adverse diagnosis on the health of their child, medical preparation to know how to convey said information should be taken more into account. Mainly because after this type of diagnosis, sometimes a conflictive decision must be made in a short period of time. Lecturers at the CEU Cardenal Herrera (CEU UCH) university of Valencia, Emilio García Sánchez and Elena Juaristi, have reviewed the most recent studies on the way of communicating prenatal “bad news” and its influence in the decision-making of pregnant mothers.
Their conclusions and the recommendations that have emerged from this analysis have just been published in the latest edition of journal Revista de Derecho y Genoma Humano. For the authors, the quality of the communicative process is decisive for the mother’s decision to be made as autonomously as possible.
According to the lecturers, recognizing the patient’s autonomy and their right to choose are protected in the Spanish Patient Autonomy Act and the Declaration on the Promotion of Patients’ Rights in Europe. But special care must be observed in the case of pregnant mothers to prevent “physician paternalism,” or forcing the patient to make a certain decision without being able to take part in it.
To do so, the information must not only be appropriate, but also delivered in an appropriate way: “In the prenatal discovery of a genetic anomaly or fetal malformation, a pessimistic and negative tone of the diagnosis, followed by an incomplete offer or explanation of possible therapeutic or palliative alternatives, negatively impact the patient’s autonomy—in this case, the pregnant woman,” they highlight.
Bad news… or important news?
Among the recommendations for medical communication in these situations, the CEU UCH lecturers suggest replacing the term “bad news” for “important news,” using the least amount of complex obstetric concepts as possible or terms such as fetal death, malformation or anomaly, which can be replaced with alternative terms that do not cause such a significant emotional impact. “When faced with a fetal anomaly or malformation, it is advisable not to automatically classify this information as “bad news” beforehand: it is more prudent to let the patients themselves interact with the information provided. Not everyone reacts the same way nor have the same convictions and values on life or suffering,” they add.
Offering a single informative viewpoint, saying everything that the ailing child will not be able to do compared to what they would do if healthy “also generates mistrust and leads to a situation of severe emotional vulnerability for the parents. This “therapeutic pessimism” can bias the consent and invalidate it.” It is also not appropriate to start by saying: “We have bad news…”; or to start the conversation with condolences: “We are very sorry to have to tell you that…”.
Respect for autonomy in the decision
In this sense, the study authors note that: “Some doctors give themselves the power to definitively sentence the future of the child. They must avoid sentencing, provide the truth and offer support, following the principle of informative neutrality. In conflictive situations, doctors must avoid “taking sides” in order not to condition the decision-making. The doctors must avoid giving their personal opinion unless asked.” The CEU UCH lecturers say the doctors also should not question the final decisions of mothers who have chosen to continue with the pregnancy of a fetus with malformations or anomalies out of respect for their autonomy.
There is also the legitimate right to not want to know the results of prenatal tests, giving consent to not be informed. This is the “right not to know.” The decision must be respected even when providing this information would initiate urgent intrauterine therapies: the Spanish law from 2002 establishes that all persons have the right for their will not to be informed to be respected.
The doctor’s suffering
Knowing how to properly communicate is an ethical and legal imperative to facilitate patient autonomy when making decisions, especially in the case of adverse genetic or prenatal diagnosis. However, in the studies conducted, the doctors themselves reveal that they suffer and have a hard time communicating this type of news. When faced with these situations, they commonly feel guilt, anger, anxiety and exhaustion, and they have a hard time maintaining a steady gaze. They feel frustration and helplessness when they confirm they can not offer a cure and do not know how to provide solace in a barely optimistic situation.
“Increased training and preparation for doctors in communicative skills is essential,” explain the CEU UCH lecturers. Their article, “El modo de comunicar ‘malas noticias’ prenatales y su influencia en la toma de decisions de las madres gestantes’ has been published in the latest edition of the Revista de Derecho y Genoma Humano, which is edited by the University of the Basque Country and is indexed in the main databases such as Scopus, PubMed or Scimago, among others.