AIMS OF THE STUDY: Based on an incidental observation made in the context of the Swiss National Science Foundation (SNSF) Project 67 "End-of-life decision-making in extremely low birth weight infants in Switzerland", this retrospective multicentre observational study aimed to analyse circumstances of delivery room deaths after late termination of pregnancy (LTOP) in Switzerland over a 3-year period.
METHODS: All delivery room deaths (including live and stillbirths) following LTOP among infants with a gestational age between 22 0/7 and 27 6/7 weeks at the nine Swiss level III perinatal centres between 1 July 2012 and 30 June 2015 were analysed. Indications for LTOP were classified as either (a) maternal emergencies or (b) fetal anomalies severe enough to cause significant maternal psychological distress. Whenever possible, specific diagnoses were recorded. Spontaneous intrapartum death and fetal death caused by injection of a cardioplegic drug were distinguished for stillborn infants.
RESULTS: A total of 465 delivery room deaths among extremely low gestational age newborns (ELGANs) were identified over the 3-year study period of the SNSF project. Of these, 195 (42%) occurred in the context of LTOP. Central nervous system malformations, chromosomal anomalies, severe congenital heart disease, multiple malformations and maternal emergencies accounted for 70% of all LTOPs. LTOPs resulted in live births in 76 (39%) cases. No correlation between gestational age and rate of live births was observed. Fetal death caused by injection of a cardioplegic drug was documented in only three cases. All infants born alive after LTOP died in the delivery room without resuscitation attempts. The use of drugs for palliative care in these patients was either rare or, alternatively, incompletely documented.
CONCLUSION: LTOPs contribute significantly to mortality rates among ELGANs and should therefore be included in perinatal registries. Uniform reporting of LTOPs should be established. Infants born alive after LTOP are entitled to comprehensive palliative care like any other infant born under different circumstances. Development of national guidelines for LTOPs (including the role of fetal death caused by injection of a cardioplegic drug and palliative birth as an alternative to induced abortion) would be highly desirable to guarantee acceptable standards of care.
L’objectif de l’étude était de décrire les pratiques des obstétriciens français face au choix des parents de poursuivre la grossesse après l’annonce d’une pathologie fœtale de particulière gravité, non curable. L’étude était une étude descriptive, transversale et nationale par questionnaires anonymes. La majorité des obstétriciens n’ont pas de formation spécifique en soins palliatifs ou éthique et ne disposent pas d’un protocole encadrant ces prises en charge, mais jugent ce document utile. Les obstétriciens jouent un rôle important dans ces situations.
This study was conducted to evaluate the efficiency of a nursing support program developed in accordance with the Roy adaptation model that was applied in addition to routine nursing care during the treatment process of pregnant women for whom the medical termination decision. This study, which was conducted using a pretest–posttest design, was a prospective, single-blind, and randomized-controlled empirical study. In the experimental group, although the first and last assessment State Anxiety Inventory scores were higher than those in the control group after the medical termination nursing support program, there was no significant difference. Compared with the control group, there were positive differences in the Scale of Ways of Coping with Stress, Adaptation Assessment Form for Role Function Area, and physical complaints in the experimental group. At the follow-up assessment, the total Perinatal Grief Scale score was significantly higher than that in the control group.
BACKGROUND: The objective of the study was to assess perinatal grief experienced after continuing pregnancy and comfort care in women diagnosed with lethal fetal condition compared with termination of pregnancy for fetal anomaly (TOPFA).
METHODS: This was a retrospective observational study which included women who chose to continue their pregnancy after the diagnosis of lethal fetal condition with comfort care support at birth at the Prenatal Diagnosis Center of Rennes Hospital from January 2007 to January 2017. Women were matched with controls who underwent TOPFA for the same type of fetal anomaly, gestational age at diagnosis and year. Women were evaluated by a questionnaire including the Perinatal Grief Scale.
RESULTS: There were 28 patients in the continuing pregnancy group matched with 56 patients in the TOPFA group. Interval between fetal loss and completion of questionnaire was 6±3 years. Perinatal grief score was similar at 61±22 vs 58±18 (p = 0.729) in the continuing pregnancy and TOPFA groups, respectively. Women in the TOPFA group expressed more guilt. The cesarean-section rate in the continuing pregnancy group was 25% .
CONCLUSION: Perinatal grief experienced by women opting for continuing pregnancy and comfort care after diagnosis of a potentially lethal fetal anomaly is not more severe than for those choosing TOPFA.
JM is a 32-year-old primagravida with polycystic ovary disease. She had extreme difficulty conceiving and was started on clomiphene 6 months ago by her fertility specialist. After doubling the dose on the sixth cycle, she successfully became pregnant. On her second prenatal visit at 12 weeks gestation, an ovarian cyst was detected. Ultrasound showed a complex ovarian mass with nodules on the bowel and abdominal wall. There was mild-to-moderate peritoneal fluid. Cytology showed adenocarcinoma of ovarian origin. Further workup demonstrated advanced stage III epithelial ovarian cancer. JM was referred to GYN-oncology who felt pregnancy-sparing debulking was not an option. The oncologist recommended termination of pregnancy due to the risks of delaying chemotherapy. JM refused, citing her fertility difficulties in the past and her desire to carry the pregnancy to term "even if it kills me." She tells the oncologist she cannot bear the thought of terminating her pregnancy under any circumstances. The oncologist wants to comply with her wishes but feels the patient is making a choice that would result in harm to herself. The oncology team requests an ethics consult.
OBJECTIVE: To investigate, from the perspective of women and partners, at what stage of a termination of pregnancy (TOP) for foetal anomalies psychosocial care (PSC) is most meaningful, what topics should be discussed, and who should provide PSC.
METHOD: A cross-sectional retrospective cohort study was conducted with a consecutive series of 76 women and 36 partners, who completed a semi-structured online questionnaire.
RESULTS: Overall, women expressed a greater need for PSC than their partners. Parents expressed a preference for receiving support from a maternal-foetal medicine specialist to help them understand the severity and consequences of the anomalies found and to counsel them in their decision regarding termination. Parents showed a preference for support from mental healthcare providers to help with their emotional responses. Forty-one percent of the women visited a psychosocial professional outside of the hospital after the TOP, indicating a clear need for well-organised aftercare.
CONCLUSION: Different disciplines should work together in a complementary way during the diagnosis, decision-making, TOP, and aftercare stages. Parents' need for PSC should be discussed at the beginning of the process. During aftercare, attention should be paid to grief counselling, acknowledgement of the lost baby's existence, and possible future pregnancies.
Le diagnostic anténatal aboutit parfois à une décision d’interruption médicale de grossesse (IMG). Il s’agit d’une décision partagée par le corps médical et le couple concernant leur futur enfant, juridiquement reconnu comme fœtus tout au long de la grossesse. Les IMG pour indications fœtales ne peuvent être décidées qu’à l’issue d’un parcours de soins où patientes, couples et soignants se doivent d’aboutir à un projet d’avenir “digne et acceptable” pour l’enfant attendu.
Au sommaire de ce dossier : "Représentations des coordinateurs hospitaliers concernant la légitimité des proches à décider d'un don d'organes" - "Le don d'organes : voir au-delà des volontés individuelles ?" - "Limitation et arrêt de thérapeutique (s) active (s) aux urgences" - "Les interruptions médicales de grossesse pour mise en péril grave de la santé de la femme. Analyse de 122 demandes à la clinique Jules-Verne de Nantes de 2005 à 2009 d'un point de vue médical et éthique" - "Face à l'émergence d'une théorie post-humaniste, le rapport au corps et la culture palliative caractérisent-ils l'entrée dans une nouvelle modernité ?" - "Déploiement technologique au XXIe siècle. Enjeux éthiques et implication du soignant et du citoyen".
Origine : BDSP. Notice produite par APHPDOC 8mHFR0xs. Diffusion soumise à autorisation
Objectifs: Il s’agissait de décrire une approche du vécu des hommes lors d’une interruption médicale de grossesse, ainsi que le soutien dont ils avaient bénéficié.
Méthodes: Des entretiens individuels, au moyen d’un guide d’entretien semi-directif, ont été réalisés auprès des hommes inclus par volontariat. Les entretiens ont été menés jusqu’à saturation des données (n=7). L’analyse qualitative du contenu a été réalisée thématiquement par catégorisation, de manière individuelle.
Résultats: Cette étude a montré que les moments les plus difficiles étaient l’annonce de l’anomalie de l’enfant et le retour à la maison, s’expliquant par un sentiment de solitude et une grande tristesse ressentie. L’incompréhension de l’entourage a été décrite, mais les hommes ont trouvé du soutien auprès des sages-femmes. Le besoin de partage était présent et les hommes ont décrit le besoin de créer des espaces de paroles.
Conclusion: Les données de notre étude sont concordantes avec la littérature sur ce sujet concernant les femmes, tant au niveau de la difficulté de l’annonce que des besoins identifiés.
INTRODUCTION: In Denmark, first trimester screening has a very high uptake (>90%). If Down syndrome is diagnosed, termination rates are high (>95%). The aim of this study was to investigate the timing of the decision of termination of pregnancy following a Down syndrome diagnosis and the factors influencing this decision
MATERIAL AND METHODS: Semi-structured, qualitative interview study with 21 couples who had received a prenatal diagnosis of Down syndrome and decided to terminate the pregnancy. Participants were recruited from obstetric departments between February 2016 and July 2017. Data were analysed using thematic analysis
RESULTS: Five themes were identified: 'initial decision-making', 'consolidating the decision' 'reasons and concerns shaping the termination of pregnancy decision', 'the right decision is also burdensome' and, 'perceived influences in decision-making'. For most couples, an initial termination of pregnancy decision was made before or during the diagnostic process, but it was re-addressed and consolidated following the actual diagnosis. Imagining a family future with a severely affected Down syndrome child was the main factor influencing the termination of pregnancy decision. The decision was articulated as 'right' but also as existentially burdensome for some due to fear of regret and concern about ending a potential life. The termination of pregnancy decision was considered a private matter between the couple, but was refined through interactions with clinicians and social network
CONCLUSION: All couples made an initial decision prior to receiving the Down syndrome diagnosis. Knowledge of the couple's initial decision may facilitate patient-centred communication during and after the diagnostic process. Couples may benefit from counselling to deal with grief and existential concerns.
Three overlapping areas of study form the foundation of the psychological impact of pregnancy loss: (1) transition to parenthood and the development of attachment, (2) perinatal mental health disorders, and (3) complicated grief. This article integrates findings from prominent lineages of theory to offer the obstetric provider an evidence-based framework for patient care. Current consensus across fields of study is that preexisting depression and anxiety are the strongest predictors of psychological functioning after loss and through the subsequent pregnancy. Compassionate care, informational guidance and timed follow-up positively impact patient outcomes. The article concludes with recommendations for obstetric provider training and self-care.
OBJECTIVE: We sought to explore the relationship between counseling quality, measured by shared decision making and decision satisfaction, and psychological outcomes (anxiety, grief, and posttraumatic stress) after second-trimester abortion for pregnancy complications.
STUDY DESIGN: We conducted a cross-sectional study of women who underwent second-trimester abortion for complications. We recruited participants from Facebook and online support groups and surveyed them about counseling experiences and psychosocial issues. We used multivariate linear regression to evaluate relationships between counseling quality and psychological outcomes.
RESULTS: We analyzed data from 145 respondents. Shared decision making and decision satisfaction scores were positively and strongly correlated in bivariate analysis (r=0.7, p<0.0001), as were posttraumatic stress and grief scores (r=0.7, p<0.0001). In the adjusted analysis, higher decision satisfaction was associated with lower grief and posttraumatic stress scores (p=0.02 and p=0.01, respectively) and higher shared decision making was associated with lower posttraumatic stress scores (p=0.01).
CONCLUSIONS: Decision satisfaction and shared decision making have a positive effect on psychological outcomes after second-trimester abortion for pregnancy complications. Counseling quality may be especially important in this setting given the sensitive nature of decisions regarding pregnancy termination for complications.
IMPLICATION: These results highlight the importance of patient-centered counseling for women seeking pregnancy termination.
BACKGROUND: Hospitals, where most births and terminations of pregnancy take place in modern society, tend to focus on addressing the perinatal loss experiences of mothers rather than fathers. Healthcare providers often overlook the loss experiences of fathers when pregnancy has been terminated because of chromosome abnormality. Little literature exists on the perceptions of these losses from the point of view of fathers in Taiwan.
PURPOSE: The aims of this study were to explore and reveal the essence and structure of the experiences of Taiwanese fathers whose spouses are hospitalized for pregnancy termination due to fetal chromosome abnormality.
METHODS: A descriptive phenomenological approach was applied to collect data. In-depth interviews using individualized, semistructured, open-ended questions were conducted with 20 fathers whose spouses were hospitalized for termination of pregnancy due to fetal chromosomal abnormalities. Data were analyzed according to Giorgi's methods.
RESULTS: The participants described their experiences as distressing and involving painful decisions. Four themes emerged: (a) "a dismayed father: the unexpected process of terminating pregnancy," (b) "a hidden source of grief: neglected care," (c) "a stressful decision: difficulty handling the deceased offspring," and (d) "a regretful father: inadequate treatment of the baby's remains."
CONCLUSIONS: Health professionals must better understand the experiences of fathers, learn to be sensitive and empathetic, and keep communication lines open to create and maintain a more compassionate and caring environment. Health professionals should provide the opportunity for fathers to discuss the decisions that they face, treat the deceased infant with dignity, and acknowledge the grief of both parents as qualitatively equal. Both mother and father should receive appropriate care while the mother is in the hospital for a pregnancy termination.
Ce livre traite d'une crise extrême : la nécessité de devoir décider, pour motif médical, de poursuivre une grossesse ou de l'interrompre. Il y a plus de dix ans, l'auteur, déjà mère de deux jeunes enfants et fort occupée par sa vie familiale et professionnelle, est confrontée à un diagnostic médical qui met en question sa troisième grossesse.
Elle doit désormais prendre la décision la plus difficile de sa vie. Elle se décide pour une interruption thérapeutique de grossesse. La décision est lourde de conséquences. C'est un enfant qui n'est plus. Il est important de porter le deuil face à une perte, mais le deuil ne devrait pas nous empêcher de reprendre le chemin de la vie. Pour avancer, l'auteur a lâché prise et choisi le chemin de la réconciliation. Il n'existe pas une seule "bonne" décision pour toutes les femmes enceintes. La décision de poursuivre ou d'interrompre une grossesse pour motif médical est totalement personnelle et dépend du contexte, souvent complexe, de la femme enceinte. Dans ce témoignage poignant, l'auteur partage son vécu et ses réflexions pratiques pour faire face à la crise et développer une nouvelle identité.
BACKGROUND: Previous studies on renal oligohydramnios (ROH) report highly variable outcome and identify early onset of ROH and presence of extrarenal manifestations as predictors of adverse outcome in most cases. Data on termination of pregnancy (TOP) and associated parental decision-making processes are mostly missing, but context-sensitive for the interpretation of these findings. We provide here a comprehensive analysis on the diagnosis, prenatal decision-making and postnatal clinical course in all pregnancies with ROH at our medical centre over an 8-year period.
METHODS: We report retrospective chart review data on 103 consecutive pregnancies from 2008 to 2015 with a median follow-up of 554 days.
RESULTS: After ROH diagnosis, 38 families opted for TOP. This decision was associated with onset of ROH (p < 0.001), underlying renal disease (p = 0.001) and presence of extrarenal manifestations (p = 0.02). Eight infants died in utero and 8 cases were lost to follow-up. Of the 49 liveborn children, 11 received palliative and 38 underwent active care. Overall survival of the latter group was 84.2% (n = 32) corresponding to 31% of all pregnancies (32 out of 103) analysed. One third of the surviving infants needed renal replacement therapy during the first 6 weeks of life.
CONCLUSIONS: Over one third of pregnancies with ROH were terminated and the parental decision was based on risk factors associated with adverse outcome. Neonatal death was rare in the actively treated infants and the overall outcome promising. Our study illustrates that only careful analysis of the whole process, from prenatal diagnosis via parental decision-making to postnatal outcome, allows sensible interpretation of outcome data.
L'auteure a subi une interruption médicale de grossesse suite à l'hémorragie interne de l'enfant qu'elle attendait. Elle témoigne de cette épreuve particulièrement douloureuse : la difficulté d'avoir à prendre la décision d'arrêter la vie du foetus malade, le doute, l'attente d'un décès programmé, l'accouchement, où se mêlent la naissance et la mort. Elle évoque également sa reconstruction.