Person-centred Health Care

Balancing the Welfare of Clinicians and Patients

Stephen Buetow

• Publisher: Routledge
• Year: 2016
• ISBN:
  9781317591535
• Edition: 1
• Topic: Medicine
• Subtopic: Health Care Delivery

Person-centred health care is increasingly endorsed as a key element of high-quality care, yet, in practice, it often means patient-centred health care. This book scrutinizes the principle of primacy of patient welfare, which, although deeply embedded in health professionalism, is long overdue for critical analysis and debate. It appears incontestable because patients have greater immediate health needs than clinicians and the patient-clinician encounter is often recognized as a moral enterprise as well as a service contract. However, Buetow argues that the implication that clinician welfare is secondary can harm clinicians, patients and health system performance.

Revaluing participants in health care as moral equals, this book advocates an ethic of virtue to respect the clinician as a whole person whose self-care and care from patients can benefit both parties, because their moral interests intertwine and warrant equal consideration. It then considers how to move from values including moral equality in health care to practice for people in their particular situations. Developing a genuinely inclusive concept of person-centred care – accepting clinicians as moral equals – it also facilitates the coalescence of patient-centred care and evidence-based health care.

This reflective and provocative work develops a constructive alternative to the taken-for-granted principle of primacy of patient welfare. It is of interest to students and academics in the health and caring sciences, philosophy, ethics, medical humanities and health management.

1 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 task-oriented 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.

Moral crisis

My story adds to mounting evidence of a moral meltdown in health care – ‘a crisis of knowledge, compassion, care and costs’.¹ More insidious than the health care scandals and total failures that periodically stun all health systems, this moral crisis – or at least an urgent need to recalibrate moral practice in modern health systems – reflects a pervasive cultural malaise: the ‘depersonalization’ of patients and clinicians, in its de-humanizing and de-individuating senses. Since the development of modernity and the bureaucratic state, this depersonalization has been growing, most recently with empirical science steadily appropriating social life – not only health care. As a consequence, it is especially disconcerting that in the name of care, much health care appears uncaring.

Caring signifies what matters to people. Despite – if not because of – the growth in advances in science and new and emerging information and communication technologies, patients and clinicians are struggling to interrelate as moral agents who care for themselves and each other. I do not wish to diminish celebrating scientific advances and their contribution to gains in human health and welfare. However, these gains have come at a high social cost. Health care has become increasingly based on, rather than merely informed by, scientific developments. Scientism threatens personal identity and intimacy, trumping calls for an open, more caring society^2,3 to replace one that – more and more – devalues and marginalizes caring as a duty within social spaces of blurred sincerity and insincerity. In the midst of this Cassandra phenomenon, health systems require clinicians to put patients first.

Yet neither patients nor clinicians are commonly treated as people – as ends within interdependent relations – by these fragmented, standardized and anonymizing systems. In these systems for health and welfare, strangers care increasingly for strangers. The personhood of patients and clinicians becomes imperceptible as systems lose their ability to discern it. Personhood is lost from the human need of patients and clinicians – as people who share vulnerability to disease and death – to feel interconnected, understood and valued equally for their equal moral worth and dignity. Illustrating how a sense of personhood has become obscured is a proposal, recently published in the Journal of the American Medical Association, to consider banning handshakes from clinical care in order to limit the spread of infection.⁴ Their proposal extends American physician Lewis Thomas’⁵ concern that ‘Medicine is no longer the laying on of hands. It is more like the reading of signals from machines’. For example, intensive care unit procedures – none of which involves touch – have been equated mnemonically with giving a ‘Fast hug’.⁶ If only understanding were increased – for example from Raymond Carver’s poem, What the Doctor Said – of how touch can enable clinicians and patients to learn and bridge their symbolic spaces through healing communion. It is no wonder that health systems struggle to enable and motivate clinicians, from a sense of moral vocation, to care for themselves and patients who trust them. Exacerbating this supply issue is the rising demand for health care.

This demand from clinicians, patients and others is taking place as patients, within ageing populations, are living longer with chronic health conditions, multi-morbidity, disability and frailty. Patients are looking beyond cure, which is not always achievable, for compassion and comfort through personal health care delivery that normatively combines intimacy with an appropriate degree of social distance. Progress toward these ends is slowly taking place. Costly modern health systems are beginning to move away from an impersonal, one-size-fits-all model of fix-it, industrialized patient care. However, personalization is acquiring a narrow meaning that is unsatisfying in its incompleteness.

Advancing biotechnologies in areas like molecular medicine, genomics and bioinformatics are personalizing medical care. These technologies enable prevention and treatment programmes to manage individual patient risks rather than group risks. Personalized risk information promises to empower patients to increase control over their health care. However, this promise is empty unless the information predicts health risks that patients can act on to reduce disease and mortality. Moreover, personalized medicine is silent on addressing social determinants of population health like poverty, and relational caring of patients as people – which cannot be ‘tacked on to biomedicine’.⁷ Faithful to another of Osler’s maxims, ‘It is much more important to know what sort of patient has a disease than what sort of disease a patient has’, such caring has been suggested to require integrating ‘personomics’ into precision medicine.⁸ Yet, clinician welfare is also still marginalized even though clinicians are people too and need their welfare revalued as ‘less a private matter … [than] something closer to a shared resource’.⁹ Thus, unmet needs remain to enable patients and clinicians to experience caring, balance their welfare and flourish – needs eclipsing the scope of evidence for patient care.

Consideration is required of the shared need of clinicians and patients to care, and be cared for, beyond burgeoning developments in science. Evidence-based medicine epitomizes the difficulty of accounting for humanistic interests of both parties. This model struggles to explain cogently how to reconcile patients’ and clinicians’ values and sources of knowledge when these different inputs conflict, and move with prudent compassion from evidence to personalized moral action. Each time that this model reconstitutes itself to try to address these concerns it becomes less faithful to its misleading name. This book therefore responds not merely to an epistemological transition of what counts as knowledge but also to a fundamental, axiological widening of awareness of what people care about within health care. Adding to my concern to revive – before cure – the importance of caring, compassion, comfort and consolation is the unhelpful reassertion by health systems of their commitment to patient-centredness.

Patient-centred health care

In the roles of critic and conscience, patient-centred health care has proven ineffective in holding evidence-based medicine to account – perhaps because, in common with consumerism, evidence-based medicine checks a powerful medical profession. However, contemporary primary care reforms in the United States have promoted patient-centred, population health care models, like the patient-centred medical home, to improve quality in health care and reduce costs. Developments of this type have revised and revived the importance of patient-centred health care such that a leading general medical journal in the United States recently opened its editorial by blandly asserting, as a mere truism, that, ‘Nearly every medical student and practicing physician aspires to provide the best possible patient-centered care.’¹⁰ Nursing tends to make the same kind of assumption whose apparent self-evidence acts against critical scrutiny amid wide-spread confusion around what patient-centred health care actually entails;¹¹ for the meaning of patient-centred health care ‘is at once obvious and obscure’.¹¹

What is clear is that patient-centred health care stipulates the duty of the clinician to put first the welfare of the patient. This care aspires to be for each patient as the only patient in a manner that also emanates from the patient’s full involvement in healt...

Table of contents

• Cover Page
• Half Title Page
• Title Page
• Copyright Page
• Dedication
• Contents
• Acknowledgements
• 1 Introduction
• Part I The need for change
• Part II Moving forward
• Index