chapter  1
14 Pages

Introduction

I had become my swollen testicle. To the junior physician in one of Australasia’s busiest Emergency Departments, it defined me as an object of clinical investigation. Differentiating me from the other men in my ward – caged in the same bleached, anonymizing gowns – it centred his care in a reductionist and mechanical culture of standardized proceduralism. The implications of this cool semblance of professionalism disconcerted me. Categorizing me by my complaint excised the need of the physician to care for me as unique and complex, as a person who might not fit standard operating guidelines for conveyor belt medicine. In so acting, the physician reduced himself to an embodied social function, losing the opportunity to partner with me to optimize our interrelated experience for mutual care. To assert my personhood, I recounted the background to my presenting condition. Despite no sound privacy in my cubicle, I told the physician what I had just told several nurses: that I had experienced similar symptoms of testicular pain and swelling of sudden onset multiple times in previous decades. They had first presented in my twenties. Invariably they abated within 24 hours – typically, straight after an ultrasound scan ruled out testicular torsion. I had hoped my physician would apply William Osler’s directive to ‘Listen to your patient, he is telling you the diagnosis.’ By trusting my coherent narrative, he could have relied less on common, pre-established diagnostic categories; not quizzed me about my sex life; and not insisted on collecting urine and blood samples to rule out an infection. He would have recognized my history of partial torsion and its recurring expression through the co-emergence of storied states of my body, mind and lived experience. Managing my medical condition as a potential emergency, he would have expedited the scan I requested, while showing empathy for my ‘dis-ease’. When the scan I eventually received revealed no pathology, I was returned as a low-acuity patient to my ward for further protracted waiting without information on the next step in my care. Feeling abandoned and that I was wasting everyone’s time, I discharged myself ‘against medical advice’. Within the hour my symptoms resolved, validating in my mind my decision to go home early. Reports like mine – of patients feeling dehumanized and a burden – are ubiquitous in health care. They illustrate unmet needs for health systems to

improve the experience of patients – who lack the power and other resources of clinicians – by overtly respecting them as persons. Patient-centred health care has been revitalized to help meet this need in the light of population health goals. However, concern for patients’ perspectives and experience is insufficient. As my story shows, it provides only a partial account that tends to neglect how the personhood of the clinician is morally important for itself and its impact on patient welfare. My physician cannot speak here for himself but I have imagined how the circumstances in which he attended me might have shaped his experience and, indirectly, mine. The emergency department was a high stress environment in which demonstrating respect and concern for personhood challenged everyone, including him. His high workload was visible. He was a busy young man working a late night shift in an overcrowded hospital. Many of his acutely unwell patients were distressed and some were audibly challenging. Unable to access my medical records to verify my story, he was disadvantaged by not knowing me and by difficulties in getting to know his patients as persons. Presumably his clinical supervisor expected him to follow and document a taskoriented clinical checklist. This standardizing of care compromised his developing clinical skills and freedom to manage complex variation. On top of all this, no urology registrar or consultant was readily available to support my inexperienced physician so late at night. For all these reasons I sensed his vulnerability and own need for care in the complex system in which we had been thrown together. Improving his capacity and mine to co-produce care for our interconnected welfare required us to recognize and manage our interdependence to shared advantage. Put simply, my welfare and his were mutually reinforcing. The moral synergisms between our respective interests highlighted a bounded but unmet need and opportunity for reciprocated care – care exchanged between the clinician and patient to enable us each to flourish as persons in just and caring terms. The widely used model of patient-centred health care is ill-equipped to manage this opportunity. Patient-centred health care recognizes the importance of the health of the patient as a person but lacks sufficient focus on how the welfare of the clinician impacts the care of the patient. Any acknowledgement by this model that the clinician, no less than the patient, is a person too is almost parenthetical. Without attending to moral values and personal virtues, the model focuses on the professional duty of the clinician to produce, with the patient, care directly for the patient even though the welfare of each party is positively interrelated. This inequality in care struggles to be functional for patient welfare because it weakens clinicians, who commonly neglect themselves and experience unwellness, while population health goals can also undermine patients’ personal care. Yet, these limitations of patient-centred care create the moral space to implement person-centred health care. Rather than take the spotlight off care of the patient, person-centred health care enlarges this light to illuminate the patient and clinician as persons beyond these particular social roles. Person-centred health care seeks to maximize the welfare of persons who – by nature of being persons – have fundamentally equal

moral worth within a professional relationship of interdependency. More concretely, the greater inherent dependency of the patient than the clinician within this relationship necessitates patients gaining directly from clinician care and patient self-care, but also indirectly when clinician welfare is protected within health care teams including clinicians and patients. Evolutionary rather than revolutionary therefore, person-centred health care aims to build on the care of the patient as a person by balancing and bridging the moral interests of each party. To co-produce ‘win-win’ care for moral reasons faithful to the personhood of the patient and clinician, it uses dialogue and, if necessary, deliberation informed by developing and expressing good character. Deeply rooted values nourish inculcated virtues that dispose the patient and clinician to live well and blossom. I wish to introduce these issues more fully now to undergird my overview of the structure and style of this book on what is needed to move from the ideal of patient-centred health care toward person-centred health care. In my Emergency Department story, a person-centred physician would have gone beyond efficiently managing the scan that I had come to expect over two decades of presenting with the same medical problem. The scan was clinically necessary for my welfare, socially just and requested by me. Giving it without fuss would have made my care patient-centred. It would have put my welfare first – but it would not have maximized my welfare or that of my physician. Real victory for us both, requiring little time or effort on his part, would have set in motion an end to my repeated emergency visits. Recognizing that my medical history made likely another negative scan, my physician could have gently garnered before this test my ready commitment to access follow-up medical care if the scan revealed no disease. That future care could prevent my symptoms recurring and fix, at last, my increased risk of complete torsion. Person-centred health care would also have helped me to acquire and exercise good character for joint benefit, a theme I will return to later.