Abstract
Fetal abnormality incompatible with life is a fact and the options for dealing with it are abortion or birth followed by death. This paper reports a qualitative study of the experience of ten women who had a pregnancy termination in a university hospital in Brazil for fetal abnormality incompatible with life. The women were interviewed approximately 40 days after the procedure. The experience was marked by strong emotions for the women, who had a terrible shock on learning of the diagnosis, which was given between 13 and 25 weeks into their pregnancies. They cried, and experienced fear, despair, anguish, a sense of uselessness and refusal to accept the situation. When they took the decision to terminate their pregnancies, the women experienced sadness, despair and guilt, and all these feelings caused them intense suffering. The killing of the fetus was the most difficult part of the termination for them. Nevertheless, afterwards they were satisfied with the decision taken and believed that it was the correct one, despite the anguish it caused. The inclusion of fetal abnormality incompatible with life in the Brazilian law on pregnancy termination would help to reduce women's suffering and contribute to the provision of supportive care by the health services.
Résumé
En cas de malformation fætale incompatible avec la vie, les options sont l'avortement ou l'accouchement suivi du décès du nouveau-né. L'article décrit une étude qualitative de l'expérience de dix femmes ayant subi une interruption de grossesse dans un häpital universitaire au Brésil pour des malformations fætales incompatibles avec la vie. Les femmes ont été interrogées environ 40 jours après l'intervention. Cette expérience a suscité de fortes émotions chez les femmes, qui avaient eu un choc terrible en apprenant le diagnostic, entre la treizième et la vingt-cinquième semaine de grossesse. Elles ont pleuré, et ont éprouvé de la peur, du désespoir, de l'angoisse, un sentiment d'inutilité et un refus de la situation. Quand elles ont pris la décision d'interrompre leur grossesse, les femmes ont ressenti tristesse, désespoir et culpabilité, des émotions qui ont provoqué une souffrance intense. Pour elles, la mort du fætus a été le moment le plus difficile de l'interruption de grossesse. Néanmoins, elles étaient satisfaites de leur décision qu'elles jugeaient correcte, malgré l'angoisse qu'elle a suscitée. L'inclusion des malformations fætales incompatibles avec la vie dans la loi brésilienne sur l'interruption de grossesse permettrait de réduire la souffrance des femmes et aiderait les services de santé à assurer des soins d'accompagnement.
Resumen
La malformación congénita incompatible con la vida es un hecho, y las opciones para lidiar con ésta son el aborto o el nacimiento seguido por la muerte. En este artículo se informa sobre un estudio cualitativo de la experiencia de diez mujeres que interrumpieron su embarazo en un hospital universitario de Brasil debido a malformaciones congénitas incompatibles con la vida. Las mujeres fueron entrevistadas aproximadamente 40 días después del procedimiento. Su experiencia estuvo marcada por fuertes emociones frente al terrible shock de enterarse del diagnóstico, el cual se pronunció entre las 13 y 25 semanas de embarazo. Lloraron y sintieron temor, desesperación, angustia y una sensación de inutilidad y negativa a aceptar la situación. Al decidir interrumpir su embarazo, experimentaron tristeza, desesperación y culpabilidad; todos estos sentimientos les causaron un intenso sufrimiento. El matar el feto fue lo más difícil. No obstante, después quedaron satisfechas con la decisión tomada y pensaron que fue la correcta, pese a la angustia causada. La inclusión de la malformación congénita incompatible con la vida en la legislación brasileña sobre la interrupción del embarazo ayudaría a disminuir el sufrimiento de las mujeres y contribuiría a la prestación de atención con apoyo por parte de los servicios de salud.
The availability of intrauterine diagnostic techniques permits precise diagnosis of a range of fetal abnormalities, including those incompatible with life. When such conditions are identified through antenatal diagnosis, the question of whether or not to terminate the pregnancy because of the abnormality is raised.Citation1 The most common abnormalities incompatible with life for which women request court authorisation to terminate a pregnancy are neural tube defects, including anencephaly, multiple congenital malformations and abnormality of the urinary system.Citation2 In these cases there are only two options open to the woman, termination of the pregnancy or allowing the baby to be born, after which it will die within a short space of time. Most terminations on this ground are carried out during the second trimester of pregnancy.
Brazilian law on abortion dates from December 1940 and only permits termination of pregnancies that result from rape or when there are no other means of saving the woman's life.Citation3 Since 1991, however, the number of court authorisations allowing terminations in cases in which there is fetal abnormality incompatible with life has multiplied.Citation2 In general, these authorisations argue that there is no justification for putting the woman at risk of obstetric complications that frequently accompany fetal abnormalities, including psychological and emotional disturbance.Citation4Citation5 The increase in court decisions of this nature has created a body of jurisprudence that may lead to future changes in the Penal Code.Citation6 This was suggested by a ruling of a Minister of the Supreme Federal Court, Marco Aurelio de Mello, on 1 July 2004, temporarily permitting pregnancy termination in cases of anencephaly until the whole body of the High Court rules on the subject.Citation7
When couples are confronted with a pregnancy in which there is fetal abnormality incompatible with life, they are faced with the awkward decision of whether or not to terminate it.Citation8Citation9 Some authors have reported that the decision to terminate may have a negative effect on the couple's relationship, frequently leading to disagreements, projection of rage, anguish and guilt.Citation9
Acceptance of the diagnosis of fetal abnormality is very difficult for women, as indeed it is for their partners, as they are faced with the very dramatic interruption of their hopes and expectations. Research suggests that when faced with this diagnosis, fantasies of incapacity, death and destruction emerge, and a mourning period begins for the loss of a healthy child.Citation10 In this same context, women who undergo pregnancy termination because of fetal abnormality report feelings of shock, negation, guilt and psychological anguish. The following events are identified as critical: the waiting period prior to abortion, signing the abortion consent form, cessation of fetal movements and the expulsion of the fetus.Citation11 However, relatively little is known about women's experience of the entire process of pregnancy termination when the reason for abortion is fetal malformation incompatible with life.
Previous Brazilian studies on the subject have been limited to an analysis of women's emotional reaction to the diagnosis that they are carrying a fetus that will not survive after birth. No other study has dealt with understanding what women go through and how they feel during the abortion, a time when it is essential to provide adequate psychological support. This was the reason for the present study.
Diagnosis of fetal malformation in the Universidade Estadual de Campinas Hospital, Campinas, São Paulo state
The Specialised Antenatal Clinic of the Centro de Atenção Integral à Saúde da Mulher (CAISM) at the Universidade Estadual de Campinas (Unicamp) has a multi-professional team that attends women presenting with an ultrasound diagnosis of fetal malformation, referred from other health services or from the CAISM's antenatal care clinic. Whenever possible, women undergo a second ultrasound and depending on the fetal pathology diagnosed, an obstetrician confirms the initial diagnosis or it is arranged for the woman to see a neonatal surgeon, geneticist, fetal cardiologist or neurosurgeon.
In cases of fetal abnormality incompatible with life, the obstetrician informs the woman with (or without) her partner or a friend or relative of the diagnosis and the options of carrying the pregnancy to term or requesting a legal termination. The medical or surgical procedure to induce abortion or labour is explained, as well as the method used to cause fetal death. The termination procedure most commonly used is the vaginal administration of misoprostol, followed by the introduction of a Fowley catheter through the cervix, with or without intravenous infusion of oxytocin as required. Injection of potassium chloride into the umbilical cord or fetal heart is used to cause fetal death. This procedure is followed in accordance with the Legal Opinion [Parecer Consulta] 23.480/98, issued by the Regional Medical Council of São Paulo state. The woman and her partner or relative receive psychosocial support and guidance with respect to the legal aspects of the decision. The woman must then decide whether or not to terminate the pregnancy. Some of the women discuss the problem with their priest or the pastor of their church.
Subjects and methods
Ten women who had terminated a pregnancy in a university hospital in Campinas following legal authorisation were selected consecutively between May and November 2002. All the women invited to participate agreed. This was an intentional sample and in-depth interviews were carried out.Citation12 The number of participants was determined in accordance with the concept of information saturation.Citation13 New participants were included until no new information was obtained.
Data collection was carried out around 40 days after pregnancy termination when the women returned for their routine post-termination check-up and genetic counselling. Semi-structured interviews were based on life experience and personal testimony following a thematic script. The interviews were tape-recorded, transcribed literally and checked for accuracy by the principal investigator during a second reading. Next, the content of each interview was entered into a computer using the Ethnograph, Version 5.0.Citation14
Experience is understood to include everything that is lived by a person and the things that remain and leave a mark, despite life's continuous changes.Citation15 In this study, “experience” refers to that which was thought, felt, perceived and imagined by the women throughout this process.
The women were asked to describe what happened when they were informed of the diagnosis of fetal malformation, the decision-making period with respect to terminating the pregnancy, the termination itself and the period immediately after it, any plans for another pregnancy, repercussions of the termination on the couple's relationship and the woman's relationship with her family, and the woman's general evaluation of her experience. These aspects took into account the search for meaning that the women described.
For the thematic analysis categories, the methodology of MinayoCitation16 was used to identify the significant units in the women's depositions. This study adhered to the rules for research involving human beings defined in Resolution 196/96 of the National Health Council of Brazil.Citation17 The research protocol was approved by the Institutional Review Board of the School of Medical Sciences, Unicamp. The women's participation was voluntary and in all cases an informed consent form was signed prior to enrolment in the study.
Results
The women's ages ranged from 17-29 years old; eight of them had completed at least primary school. Two had no steady partner. One woman said she had planned her pregnancy, and all but one had wanted her pregnancy in some way or another. Gestational age at which fetal abnormality was detected varied between 13 and 25 weeks. Only one woman had a termination as early as 16 weeks of pregnancy. The others were more than 22 weeks pregnant, with the most advanced being 31 weeks.
The diagnosis of malformation
Information about the diagnosis had not always been provided in an adequate way, according to the participants. Learning about the malformation was a shock to the women and resulted in tears, fear, despair, anguish, suffering, guilt, feelings of uselessness and unwillingness to accept the news.
“I talked to my mother, I wanted to kill myself, I told my mother that I had to think about my other child because if I didn't, I wouldn't be able to bear it… Ah! it's a horrible feeling, really bad, because it's about losing a child. I felt terrible but I kept thinking about my other child because I couldn't just think about myself, I had to think about him too, didn't I? I kept thinking about him and about her [the fetus] too …” (Cristiane, age 17, second pregnancy)
The decision to terminate the pregnancy
The women decided to terminate their pregnancies only after confirmation that the baby would not survive after birth. Some women were worried about the risk that the pregnancy could represent to their own health due to the malformation. They chose termination believing that this would relieve both the suffering of the fetus and their own. In reaching this decision, they were supported by their partners. However, these were moments of much despair and suffering.
“So I decided to do it because there was nothing else to do. There was no point in keeping a child that wasn't going to survive. I would only keep hoping, you know. I had already bought little things, clothes for it, everything. I've kept everything to this day, right? So what was the use in me keeping hoping? See it, feel it moving in my belly, because if it was going to die…” . (Tatiana, age 19, second pregnancy)
Requesting legal authorisation
Obtaining legal authorisation to terminate the pregnancy was very difficult both emotionally and bureaucratically. The women felt humiliated by having to bother about getting official permission at such a painful time and at having to face questions regarding their right to decide about their lives and the pregnancy.
“It is difficult to speak about this because it was a very difficult moment. You are going there in pain [to the Office of the Attorney General]. Are they thinking about what I am going through? About what I am feeling? And I have to go there, my husband and I have to go there alone… and sign papers… it's very difficult, very difficult indeed.” (Vanessa, age 18, first pregnancy)
Going through the termination
The women also found it very difficult to speak about what they went through during the procedure of pregnancy termination. It was something terrible for them, a nightmare. They reported feelings of shock, sadness and panic, not being able to accept the situation, agony, solitude and fear. Many of these feelings continued after the expulsion of the fetus. The description of how the fetus is killed at the time the women were informed about the termination procedure and the moment when it was actually being carried out were the most difficult part for the women.
“Because you start to look at the ultrasound… then you start to say: I'm killing it, I'm helping to kill the baby inside my belly; I don't want to do this; it's a very difficult thing to do; this procedure [termination]…you feel a loss… when he started the injection, I started thinking…it's going to die inside me” . (Joseane, age 23, second pregnancy)
It was important for the women to see the body of the dead baby so that they could confirm the abnormalities, if these were external. Seeing the body also provided an opportunity to mourn the loss.
“Oh, it was difficult…I went alone. I went and I saw it. I saw the defects that she had; it was a girl; and I saw the good side too. You know, I saw that she really had the defect that the doctor said she had… that her little foot was bent, her little neck was fixed to her chest. I saw all this in her, but I saw the beautiful part too; I saw that her eyes were like her father's, you know, her little hand was so small, the perfect little fingers, you know. That made me happier” . (Vanessa, age 18, first pregnancy)
After the termination
Immediately following pregnancy termination the women experienced sadness, panic, not being able to accept the fact, hurt and regret. On the other hand, they also felt relief, because they felt that the decision had been the right one. Some described feeling a sense of achievement because they believed that this was the only thing they could do for their child at that moment.
“I felt victorious because it was the only thing that I could do for him [the fetus] at that time. I couldn't do anything else and I had to have the strength to do that. I felt victorious” . (Vanessa, age 18, first pregnancy)
In the 40 or so days after the termination, the women said they had accepted the situation but they still cried a lot, felt guilty, sad and vulnerable. They experienced the pregnancy termination as a very wounding experience because they had lost a child. However, they all believed that the decision to terminate the pregnancy had been the best decision.
“I can't say that I am 100%. I'm not well. As soon as you touch on the subject, it all comes back. I started to feel like this as soon as I got here [Obstetric Outpatient Department for the follow-up appointment]… I felt bad. You remember everything that happened [crying]…the guilt that I…I ended my daughter's life. Let's say it as it is. You can change the words but we still feel the guilt, we feel a little guilty, we are, because we were the ones who decided, although the doctor said… but the final decision was mine and his [her husband's]” . (Marina, age 28, first pregnancy)
Plans for another pregnancy
Although they were afraid of going through the same thing again, women affirmed that they would like to become pregnant again, but would like to wait for some time.
“One day, yes, I think so. I'm afraid, for example, of it all happening again. If it happened again now, I don't think I would be sufficiently ready to go through the same procedures.” (Joseane, age 23, second pregnancy)
Repercussions for the marital relationship
The women felt their marital relationships had improved because the experience of terminating the pregnancy strengthened the ties of affection and they said there had been no change in their sexual relationships.
“…I remember that after he heard it all… I told him that the psychologist said something that I thought was very important… It helped a bit, I remember she said that in the baby's short lifetime, she may have brought some good things, you know, some changes, understand?… So I tried to find something good in all this, you know? I think it was our marriage, and I believe that we became closer, created something stronger, you know? Because a daughter, right? After all that happened, one supporting the other… (Julia, age 21, first pregnancy)
General evaluation of the experience
Women said that they had been supported by their families and friends, although they had come into contact with people, both in the family and outside, who did not accept their decision for religious reasons. However, according to the women, their religious beliefs did not influence their decision.
In general, participants considered that the pregnancy termination and the loss of the baby was a very sad experience that marked them, caused suffering, greatly affected them emotionally and that it was difficult to accept it had happened. However, despite all this, they considered that what they had gone through had changed their values, their family had pulled together after the termination and they themselves had become more mature and stronger.
“What was good was the self-esteem I gained because I never thought that one day I would go through all this and still be able to walk with my head held high… The bad thing was to have lost him… to have lost the baby; this is something very bad, to know that you are bearing a child, a living being that is not going to stay with you… It's about having been pregnant, although I didn't, I didn't plan anything, not even the child…” (Adriana, age 27, first pregnancy)
The interdisciplinary health care received by the women, both during the decision-making process and the termination and after the procedure, was seen as an effective support mechanism to help them overcome their difficulties.
“Look, the doctors are like this, they help you a lot, they talk to you… they give you assurance… so I think that the time I spent there left me calmer because I knew that… it would have to happen, so we just prepared ourselves… Look, I felt ready because the psychologist too, she helped me… she calmed me down, I knew what the procedure would be like from then on, so I came here already knowing all that…” (Joseane, age 23, second pregnancy)
Discussion
The experiences described here were marked by much suffering and powerful negative emotions. The feelings of shock, fear, guilt and anguish reported by the women when informed of the diagnosis of fetal abnormality, followed by feelings of uselessness and of incapacity to produce a healthy child, are similar to findings from other recent studies in Brazil.Citation10Citation18 The women's ambivalence regarding the decision to end the pregnancy was obvious, even though they also felt that this was the best decision. This ambivalence was also reported by Dallaire et al.Citation11 However, the women tried to draw some positive lessons and felt that the experience had allowed some aspects of their lives, particularly their self-esteem and their marital relationships, to become stronger.
The termination of the pregnancy was because the baby's life was not viable, not because the pregnancy was unwanted. Thus, one author has recommended that in cases of fetal abnormality incompatible with life, termination of pregnancy should not be classified as an induced abortion, medically or legally, but rather as a therapeutic premature delivery.Citation19 Consequently, it would not be included within the scope of the legal restrictions on abortion.
With respect to the decision-making process, it should be noted that although the majority of women were supported by their partners, the women felt that they themselves carried the heavier burden of the two during the process. This is a matter of gender roles, in which traditionally the responsibility for reproduction is placed on women.Citation20Citation21
Because the moment when the fetus is killed by injection is the worst part of the process, health workers need to be prepared to communicate adequately with women at this time.Citation22 Both health workers and patients need to be made aware that killing the fetus and terminating the pregnancy may help couples to avoid the even more agonising experience of the baby dying slowly in the immediate post-natal period.Citation23 Furthermore, the procedure of killing the fetus can be performed in a humane way, including hospitalisation of the woman, use of anaesthesia and the presence of her partner or someone close to her. The ultrasound image of the procedure should not be shown to the couple because this unnecessarily increases their suffering.
Seeing the body of the baby immediately after the termination was perceived as positive, in that it allowed the women to verify the fetal malformations that had been diagnosed and gave them the opportunity to experience their mourning in a less traumatic way. Maldonado argues that although this is a painful moment for the woman, it is fundamental for marking the reality of the loss and an essential stage in the mourning process.Citation24
It is also necessary to remember that the manner in which the physician provides information to the woman may have a positive or negative effect on the woman's decision-making process. It is fundamental that she be treated with great care and respect and at the same time be informed about the details of the fetal diagnosis and the procedure that will be carried out for termination. Health workers must act neutrally and with respect regarding the woman's decision whether to terminate the pregnancy.Citation9Citation11 Availability of an interdisciplinary specialist health care team would appear idealCitation9Citation10Citation25 and was indeed considered by the women in this study as a positive aspect, possibly helping them get through this difficult experience, including psychological care that allowed them to cope emotionally with their decision.
Although the women in this study reported that their marital relationships had improved and become stronger after the experience, other reports in the literature found exactly the opposite, that this experience may lead to complications in the marital relationship.Citation11Citation26 The results of the present study may reflect the fact that the decision to terminate the pregnancy was shared by the couple and that the level of care and support was high.
As reported by other authors,Citation11Citation27Citation28 women in this study referred to feelings of relief and of the rightness of their decision to terminate the pregnancy, even in the midst of all the suffering, following confirmation that the fetus was not viable.
A common complaint of most women was the embarrassment and humiliation resulting from the process of requesting a judge's authorisation from the Office of the Attorney General. They questioned the validity of the law with respect to their right to decide about their lives and ending the pregnancy and about having to go through the burden of obtaining the court's permission during such a painful time.
This finding points to the need for a change in the Brazilian law with respect to abortion in cases of fetal abnormality incompatible with life. An amendment is being supported not only by the women's movement but also by medical organisations such as the Brazilian Federation of Societies of Obstetrics and Gynecology (FEBRASGO) and the Federal Council of Medicine. In addition, every poll carried out in recent years has shown overwhelming public support for the decriminalisation of abortion on these grounds. Making abortion legal would eliminate the constraints described by participants and guarantee women's right to face the end of the pregnancy, which occurred from their point of view when the seriousness of the malformation was confirmed.Citation6Citation29 The temporary restraining order placed by Minister Marco Aurelio de Mello, granting authorisation of all pregnancy terminations in cases of anencephaly,Citation7 represents a step forward in this regard.
Lastly, it is necessary to ensure that women who undergo such experiences are guaranteed psychological support. The change in the law in Brazil discussed above, together with good quality, all-encompassing, supportive health care in hospital, will be a major help to women going through the painful experience of the diagnosis and termination of a pregnancy of a severely malformed fetus.
Acknowledgments
The authors would like to thank the women who shared their experiences with the first author, aware that remembering and talking about them would cause suffering. We are also grateful to Dr Helaine Maria Besteti Pires Mayer Milanez for her critical revision of the medical content of the research proposal. We acknowledge the collaboration of the staff of the Centro de Pesquisas em Saúde Reprodutiva de Campinas (Cemicamp) throughout the study. The project was supported by the Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP) and the Fundo de Apoio ao Ensino e à Pesquisa (FAEP) of the Universidade Estadual de Campinas. This study was carried out as part of the first author's work for a master's degree. The article was translated from Portuguese by Lesley Hanson Moura.
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