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A crucial part of patient management is effective delivery of unfavorable information, in a manner that will not affect future engagement with them, their coping strategies and their compliance to treatment. We present a case report detailing how to communicate a life-changing diagnosis to patients.
Two siblings, aged 20 and 18, presented with primary amenorrhea to our Pediatric and Adolescent Gynecology Unit. They were female phenotype with 46XY karyotype. The elder sister had bilateral herniorrhaphy at 14 years with Breast Tanner 4, Pubic Hair Tanner 2, and normal female external genitalia. The younger one had left herniorrhaphy at 12 years, with Breast Tanner 3, Pubic Hair Tanner 1 and normal female external genitalia. They were accompanied by their mother unaware of their diagnosis. Our senior most clinician reviewed their laboratory and imaging results and led the diagnosis disclosure of Complete Androgen Insensitivity Syndrome to the siblings and their mother. Her opening statement was, “We are all different.” She then explained the five factors that contribute to gender and then described their diagnosis, what it meant and how it came about. Further, she discussed the cultural and religious implication and informed them of support groups available. Despite the comprehensive discussion and the opportunity to ask questions at any point, the patients seemed perturbed by the news and remained silent. The clinic visit was finalized by answering the concerns raised by their mother and scheduling a follow-up appointment to allow for further conversation and debriefing.
Bad news is information that has potential to negatively alter a patients view of their future. Both the process of breaking the news and the content have a profound effect on the patient therefore the delivery has to be well thought out. It is a critical advanced communication skill for clinicians. One can opt to use a non-structured approach, like we did, or employ predefined communication strategies on breaking bad news. One example of these frameworks is the SPIKES protocol: an acronym that details consideration of the Setting, Perception, Invitation, Knowledge, Empathy and Summary. Such protocols have been cited to improve clinicians confidence in breaking bad news and improve patient involvement in the decision-making process. However, effective communication must allow for deviations from the sequence to allow patient expression of emotions, rather than a strict focus on the process of breaking bad news. In addition, breaking bad news should not be seen as a singular event. As seen in our case, the revelation of the diagnosis can ‘numb’ the patients and hence require follow-up sessions to debrief and chart a care plan.
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