“I Can’t Imagine How You Must Feel”: Phenomenological Incoherence in the Patient-Provider Relationship
Lindsey Johnson Edwards, ThM, PhD Student, Southern Methodist University, Dallas, TX
After delivering unexpectedly bad news to the patient regarding her CLOVES Syndrome progression, the physician whispered, “I can’t imagine how you must feel.” The physician quickly exited the room, leaving the patient alone as she had to process what just took place. The patient couldn’t help but to wonder, “Did he even try to imagine how I feel right now?” CLOVES Syndrome is a congenital, ultra rare disease that affects each patient uniquely. Despite having the same mutation at the genomic level, the phenotypic variances among the patient population cause the disease to develop and progress distinctively in each patient’s body. And yet, despite the well-documented recognition of the disease’s variability, patients have reported that physicians rarely ask, “How do you experience CLOVES syndrome?” Rather, physicians tacitly assume that knowing the internal characteristics of the disease is often sufficient for understanding the patient’s experience of the syndrome. And yet, if grasping the physiological nature of the disease is truly sufficient for caregiving, then we ought to wonder why so many patients leave clinical encounters feeling that the provider has failed to grasp what it means to live with a chronic or disabling illness.
In this paper I will argue that incoherence in the patient-provider encounter is a consequence of the phenomenological gap between the patient as storyteller and the provider as story-recaster. This paper will intertwine theology, philosophy, and medical anthropology in order to address the incoherence in the patient-provider relationship: however, it will also contain insights from my lived experience as a CLOVES Syndrome patient longing for coherence with my healthcare providers. Utilizing the works of S. Kay Toombs and Arthur Kleinman, I will first explore the reductionistic approaches to caregiving that dominant modern biomedicine. This section will illustrate the disproportionate interest in a diagnosable disease over one’s illness experience, underscoring the ways in which one’s psychosomatic, sociosomatic, and spiritual experience of illness is reduced to and recast as a mere scientific construct. Second, I will retrieve narrative practice as a potential therapy for the ill of phenomenological incoherence. Weaving together insights from narrative theological ethics and narrative medicine, I will elucidate how narrative competence teaches the provider to inhabit the lived reality of the patient. Building upon the foundation of narrative practice, I will then conclude this paper by proposing “narrative empathetic embodiment” as a means toward cultivating coherence in the clinical encounter. This section will envision the ways in which narrative empathetic embodiment allows the provider to further enter into the patient’s phenomenology of illness and offer the hope of healing through empathetic engagement in the patient’s experience.
In this paper I will argue that incoherence in the patient-provider encounter is a consequence of the phenomenological gap between the patient as storyteller and the provider as story-recaster. This paper will intertwine theology, philosophy, and medical anthropology in order to address the incoherence in the patient-provider relationship: however, it will also contain insights from my lived experience as a CLOVES Syndrome patient longing for coherence with my healthcare providers. Utilizing the works of S. Kay Toombs and Arthur Kleinman, I will first explore the reductionistic approaches to caregiving that dominant modern biomedicine. This section will illustrate the disproportionate interest in a diagnosable disease over one’s illness experience, underscoring the ways in which one’s psychosomatic, sociosomatic, and spiritual experience of illness is reduced to and recast as a mere scientific construct. Second, I will retrieve narrative practice as a potential therapy for the ill of phenomenological incoherence. Weaving together insights from narrative theological ethics and narrative medicine, I will elucidate how narrative competence teaches the provider to inhabit the lived reality of the patient. Building upon the foundation of narrative practice, I will then conclude this paper by proposing “narrative empathetic embodiment” as a means toward cultivating coherence in the clinical encounter. This section will envision the ways in which narrative empathetic embodiment allows the provider to further enter into the patient’s phenomenology of illness and offer the hope of healing through empathetic engagement in the patient’s experience.