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Coda Change

Mar 25, 2018

Jonathan and his wife Anna thought they were coming to the emergency department for a routine sickle cell pain crisis. However, his illness takes him down an unexpected spiral of multi-system organ failure and critical illness. What was a routine patient encounter becomes a much more personal human interaction that causes the provider to question her perspective on chronically painful conditions and realise the effect our words and subtle actions have on our patients. Jessica Mason utilises the powerful tool of narrative storytelling, adapted to a live lecture format, to tell Jonathan’s story from his own perspective. In doing so, Jessica makes Jonathan the teacher. Jessica hopes you will remember the story and remember the medicine. In 2016 Jessica received an email from Jonathan’s wife. The email was to inform her of Jonathan’s death, from complications of sickle cell disease. He was 43. This stark note gave Jessica pause, and prompted her to reflect on her interactions with Jonathan and his wife and wondered what lessons could be learnt about how we view chronically painful conditions and the unconscious biases we carry. By reliving her interactions with Jonathan and utilising interview audio with Jonathan, Jessica highlights the struggles that face patients with painful, chronic conditions. They are often burdened by fear of judgement or fear of being undertreated when accessing medical services. Concurrently, healthcare providers can be afraid of turning people into heroin addicts or be fearful of having their compassion exploited. Jessica posits this is all driven by the stigma of opioid use in emergency departments. Jessica used to believe pain crises from sickle cell disease were relatively easy to manage. However, Jonathan’s powerful narrative provides a wonderfully effective teaching opportunity about sickle cell disease and other chronically painful conditions and how they are managed. Join Jessica Mason as she mixes medicine with the human condition to pass on valuable wisdom from the patient’s perspective. In the words of the Jonathan’s wife Anna, “If you don’t teach others about what you have, no one will know.”

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