UK consensus guidelines for the delivery of unexpected news in obstetric ultrasound: The ASCKS framework

Abstract

Background Studies indicate there is a need to improve the delivery of unexpected news via obstetric ultrasound, but there have been few advances in this area. One factor preventing improvement has been a lack of consensus regarding the appropriate phrases and behaviours which sonographers and ultrasound practitioners should use in these situations. Aims To develop consensus guidelines for unexpected news delivery in Early Pregnancy Unit and Fetal Anomaly Screening Programme NHS settings. Methods A workshop was conducted to identify priorities and reach consensus on areas of contention. Contributors included interdisciplinary healthcare professionals, policy experts, representatives from third-sector organisations, lay experts and academic researchers ( n = 28). Written and verbal feedback was used to draft initial guidance which was then circulated amongst the wider writing group ( n = 39). Revisions were undertaken until consensus was reached. Results Consensus guidelines were developed outlining the behaviours and phrases which should be used during scans where unexpected findings are identified. Specific recommendations included that: honest and clear communication should be prioritised, even with uncertain findings; technical terms should be used, but these should be written down together with their lay interpretations; unless expectant parents use other terminology (e.g. ‘foetus’), the term ‘baby’ should be used as a default, even in early pregnancy; at the initial news disclosure, communication should focus on information provision. Expectant parents should not be asked to make decisions during the scan. Conclusions These recommendations can be used to develop and improve news delivery interventions in obstetric ultrasound settings. The full guidelines can be accessed online as supplemental material and at https://doi.org/10.5518/100/24 .

The challenges for patients and sonographers when complex obstetric anomalies are identified

“…Expectant parents are often alluded to unexpected findings through the sonographers' body language and they have expressed a desire for immediate information 19,20 . Delays in the communication of results can prompt feelings of anger and hurt and can cause distrust in providers 16,20 .…”

“…[16][17][18] This means that sonographers have the potential to positively impact parental outcomes related to mental health and wellbeing. Common psychological responses and recommendations to reduce distress are outlined in Value-free language; unexpected rather than abnormal or problem 17,20 Discuss the findings in a quiet, private area 20 Clear and honest communication 16,20 Use the term baby rather than fetus, unless the parent has shown a preference for fetus 16,20 Provide information in a variety of formats 18 about the findings and support 20 Empathise with distress, if present, rather than sympathy about the diagnosis 16,20 Provide family centredcare 16 Sensitivity within followup appointments 2 Ultrasounds can be special moments, take a few minutes to view the typically developed features rather than focus only on the anomalies 17 Ongoing Ongoing anxiety 13 Worries about delivery, care pathway and bonding 12 Hope 17 Adjustment 13 Fear of judgement about decisions 13 Post-traumatic stress disorder 14,15 3.2 | Challenges for sonographers Within Australia, the responsibility of the communication of unexpected findings in obstetric ultrasound has increasingly, yet inconsistently, shifted to sonographers. 21 A survey of qualified obstetric sonographers and trainees found that 79 (31.7%) respondents had communicated a congenital anomaly finding to their pregnant patient within the preceding month.…”

“…22 Expectant parents are often alluded to unexpected findings through the sonographers' body language and they have expressed a desire for immediate information. 19,20 Delays in the communication of results can prompt feelings of anger and hurt and can cause distrust in providers. 16,20 Some sonographers experience anxiety and turmoil about the decision to inform parents as they feel responsibility to the parent, but the lack of clarity around their role in the communication of unexpected findings can pose a barrier.…”

“…19,20 Delays in the communication of results can prompt feelings of anger and hurt and can cause distrust in providers. 16,20 Some sonographers experience anxiety and turmoil about the decision to inform parents as they feel responsibility to the parent, but the lack of clarity around their role in the communication of unexpected findings can pose a barrier. 21 Further complexity for sonographers in relation to communication is created by the language and terms within guidelines or publications that diverge with those considered appropriate by parents who have received a prenatal diagnosis.…”

“…An example is the "banana sign" in screening guidelines, 4 which contrasts the recommendations to avoid terms that include comparisons to fruits and vegetables within consensus recommendations. 20 Even when sonographers do not deliver the initial news, they may provide follow-up scans and should maintain awareness of communication recommendations such as the avoidance of value-laden terms, assumptions, or out-dated judgements of disability. The use of baby rather than fetus, anomaly rather than abnormality and expected rather than normal are examples of language suggestions.…”