A Patient Takes Center Stage

Dr. Jaz Gray, PhD

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Patient Narrative

Dr. Gray was born with a condition called arteriovenous malformation. It is one of the rarest vascular anomalies in the world. The presence of too much blood destroys tissue, bone structure, muscles, and teeth. As one's condition worsens, arteriovenous malformation can lead to aneurisms, strokes, and in sever cases, death. Over the past 20 years, Dr. Gray has undergone over fifty surgeries attempting to treat her health condition, some lasting multiple hours. Her recovery time could take weeks and months. However, what does it mean to 'recover'? Dr. Jaz Gray spoke of the difficulty of her journey; the physical pain that persists into the present, the emotional battles, and the questions of self-worth and meaning. Her life-plotting narrative structure orients us towards a transformative path that in the face of adversity, overcomes and establishes meaning. 

Story vs. Narrative

A story is a sequence of events. The recent global pandemic is an example of a story in which a virus rapidly spread across the globe testing our medical infrastructures, our economies, and our political and interpersonal relationships. A narrative on the other hand, is a first-hand account of the transformative affects the pandemic had on the life of an individual. The narrative can give a factual account of the events; however, it goes beyond a simple story by attaching meaning to the events. With respect to medical patients, Dr. Jaz Gray stated that the types of narratives patients tell confirm, condemn, or contextualize the role of medicine in their lives. As family, friends, and medical providers. it is worth understanding these patient narratives because how we approach the patient’s narrative can either assist them in becoming the highest version of themselves or hinder them. The use of narrative can build resiliency in the time of trial, it can give a patient courage to move forward. In return, we can learn from the patient narratives we encounter and live life differently.

The Three Types of Narrative

Restitution Narrative

The restitution narrative follows the line that something has been lost or taken, and that it must be given back to its rightful owner. Dr. Gray stated that this is the narrative style that people in public health generally love. An individual has an encounter with an antagonist, for instance a medical issue. The patient then sets off to solve the problem. They go to their physician; they undergo treatment and take medication. After following the necessary steps, the issue is resolved, and they are “back to normal”. The “correct” diagnosis has come back, they are victorious. Their happy life can now continue as it was before. While patients often seek this narrative, the narrative is not directly focused on the patients. Often, it is a narrative sought by those surrounding the patient. It affirms that what they contributed to the patient’s life was beneficial. However, the restitution narrative can be harmful for the patient because they may be on a path that will never put them back where they once were. It can instill a desire towards something that is unrealistic and ultimately harmful.

Chaos Narrative

The chaos narrative is the narrative that arises in the depths of the storm. This is when situations are so chaotic and seemingly hopeless that structure itself begins to dissolve. Events are unsequential, they appear to be without cause. In these instances, a patient cannot fathom how their situation could possibly improve. It is a journey with no “light at the end of the tunnel”. Dr. Gray stated that the chaos narrative is not only valid, but also necessary. She claimed that it is a key stage in developing the patient’s identity. A patient may acknowledge that there is no “normal” to go back to, and that in fact, that their direction is forward.  

Resources

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For more information about chaos, restitution, and quest narratives, see this work of Arthur Frank.

Quest Narrative

Finally, the quest narrative is a transformative narrative that meets suffering head on. A person does not return to the world that existed for them before, but instead is transformed by the journey. The quest narrative no longer focuses on the past. It acknowledges the present moment and moves towards a feature of affirmation. If there is not substantial forward progress, the quest narrative affirms the significance of the present moment. That we exist, that we matter. That in itself, is transformative in that there is no false aim that keeps one looking backwards, nor is it a state of total disillusionment. By adopting a quest orientated personal narrative, the self is affirmed in the present moment, the self becomes forward oriented, and as such the self can advocate for itself and for others going through similar trials.

Conclusion

The different narrative structures may embody themselves at different stages of a person’s life. One stage may intensify the mental and emotional toll of the situation a person is going through. Another narrative may fixate an individual on things that are not beneficial for them. However, each of these stages are beneficial in transforming and allowing the individual to find a greater sense of self, to establish their meaning. The quest narrative is the culmination of a person’s view on their own life that helps them affirm and advocate for themselves and others.

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This page was created by Bioethics graduate student Flavius Rusu.

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Flavius Rusu is a second-year graduate student at the Bioethics Institute. He is the Craves Scholar and manages the content for the Bioethics Hub.

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