Can medicine revive the dying patient-as-subject?

Evidence-based medicine (EBM) has come to dominate medical epistemology. Whether you are designing a clinical trial, prescribing medication, or Googling an unusual symptom you will most likely encounter EBM: the new standard of medical knowledge. EBM aims to improve patient care by systematizing medical research in a hierarchy of ‘best evidence’. This hierarchy helps to streamline clinical guidelines in the face of an ever-growing literature and the subjective ambiguities of the clinical encounter. But ambiguities remain, and the most notable source of ambiguity is the patient. Since the early EBM movement in the 1990s – when EBM identified itself as a paradigm shift – the movement has struggled to incorporate patient subjectivities into its objective standards of evidence. 1

In its most recent incarnations, EBM seeks to balance a systematic approach with a patient-centered ethic. Patient preferences, values, narratives, and lived experience are ostensibly integrated into the clinical expertise and patients’ choice of the clinical encounter. At first glance, this integrative approach may seem inclusive and progressive, revitalizing the patient’s role and expertise in the management of her own health. Respect for autonomy and consent, it seems, is enough to prevent ‘slavish, cookbook approaches’ in dealing with individual needs and experiences.

But does this ‘integration’ of patient subjectivities really address the patient’s lived experience? EBM is not simply an epistemological ranking system, but an institutional, political, and epistemic system that legitimates and invalidates certain discourses in clinical medicine. EBM systematically creates its object of inquiry at the site of the idealized, standardized, and generalized patient — what I call the patient-as-object. This is distinct from the patient-as-subject: a legitimate epistemic actor in the clinical encounter. The patient-as-subject is too messy, too ambiguous, for EBM’s systematic pursuit of causal explanations. The patient-as-subject disrupts EBM’s standards of health because it is not the ideal clinical body. Where does this leave the subject — the thinking, feeling, experiencing patient — in systematized clinical medicine?

Subsuming so-called patient-centeredness and clinical instincts, EBM is nothing less than a medical Leviathan, voraciously consuming the clinical encounter. The patient-as-subject remains absent and abject, replaced by the standardized patient-as-object.

Subjects & Objects: The Contested Sites of Clinical Medicine

In simplifying clinical complexities, EBM attempts to translate contextual uncertainties into focused and manageable guidelines, but it does so by neglecting patient subjectivities. Patients’ experiences of illness (not just values, autonomy, or consent) remain incompatible with EBM’s standards of evidence. In the clinic, these subjectivities remain external to meaningful discourse since they are often uncertain, internalized, and ambiguous. EBM only acknowledges subjectivities that are legitimated and subsumed by clinical expertise or read through the ethical lens of autonomy/consent. Progress in medicine is interpreted as the slow accumulation of research evidence, allowing the “assumptions, methods, and practices of scientific medicine to go unquestioned” 2.

The patient-as-subject has no place in EBM since she is only revealed through medical phenomenology, a process through which individuals are encouraged to define (and reclaim) health and illness through personal experience. The process of phenomenology reveals more than an autonomous and consenting patient at the mercy of clinical expertise; rather, patients can be ill and happy, or even ill and healthy, so long as illness is defined experientially rather than biomedically or probabilistically (for example, see the work of Havi Carel). This doesn’t fit into EBM’s framework. EBM creates the patient-as-object as the objectified body through which guidelines are enacted and justified. This is the inevitable consequence of generalizing data from medical trials that represent the homogenized body of an idealized patient population. With generalization comes objectification. Patient values direct rather than inform clinical decisions in EBM since patients are objectified consenters rather than epistemic actors.

The distinction between patient-as-subject and patient-as-object that I have in mind not only distinguishes the unique roles a patient plays in clinical medicine, but it also suggests a distinction between the unique sites of the clinical encounter. The general site of clinical medicine is the patient-body: the point of application and interaction at which the heterogeneous institutions, theories, and methodologies of clinical medicine meet. This embodied point of reference can be the object created by the clinical gaze, the subject in fear or relief, or the point of clashing epistemologies. In EBM, this site is the generalized patient-as-object; in phenomenology, this site is the embodied patient-as-subject. Critical appraisals of EBM that call for greater ‘patient-centeredness’ miss this gaping epistemic divide. Empathy, narrative, and patient participation in the clinic only approximate the patient-as-subject, appeasing calls for holistic and personalized biomedicine. Attempts at an intertwined medicine of ‘evidence-based patient-centered care’ fail to acknowledge the incompatibility of these clinical sites.

So we must ask: what do we do with the patient in EBM? Can a holistic approach be developed where the subjectivity of the patient and objectivity of clinical evidence work together?

  1. In defining EBM, the Centre for Evidence Based Medicine currently emphasizes the need for both conscientious clinical expertise and current best evidence:

    Evidence-based medicine is the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients. … Good doctors and health professionals use both individual clinical expertise and the best available external evidence, and neither alone is enough. Without clinical expertise, practice risks becoming tyrannised by evidence, for even excellent external evidence may be inapplicable to or inappropriate for an individual patient. Without current best evidence, practice risks becoming rapidly out of date, to the detriment of patients. Evidence-based medicine is not restricted to randomised trials and meta-analyses. (http://www.cebm.net)

  2. Goldenberg, M. (2006) On evidence and evidence-based medicine: Lessons from the philosophy of science. Social Science & Medicine. 62: 2629. Bruce Charlton (2009) also provides an entertaining commentary on the unchallenged, evidence-based beast: “…the {EBM} Zombie has no life of its own (i.e. Zombie science is not driven by the scientific search for truth); it is animated and moved only by the incessant pumping of funds. Funding is the necessary and sufficient reason for the existence of Zombie science; which is kept moving for so long as it serves the purposes of its funders (and no longer).”

by

Michael Cournoyea
Michael Cournoyea is a doctoral student at the IHPST at the University of Toronto. He received his BSc at McGill University in Biology and Philosophy and has worked at the intersection of these disciplines for the last five years. He currently works as a don at Victoria College and is active in student life on campus. His work examines the pluralism and politics of causal explanations in medicine -- whether biomedical, evolutionary, phenomenological, or sociological. The implications of his work are pragmatic, engaging issues in racialized medicine, the sovereignty of patient health, and how we should live the healthy life.

3 Comments

  • Boaz Miller
    Boaz Miller Reply

    Great post. EBM is often characterized by its critics as simplistic empiricism. I think this has a lot to do with the question you are raising. For simplistic empiricists, anything that cannot be observed and measured, such as patient’s subjectivities, does not exist. In this respect, as long as EBM does not change from the root, the patient-as-subject cannot enter the picture.

    On the other hand, EBM is far from delivering its promise of providing an objective, algorithmic, and value-free way of evaluating medical evidence. This means that in clinical practice, the decision of which course of action to take involves a lot of subjective judgment. The problem is that it typically the doctor’s judgment. As you rightly note, the patient is thought of as someone who has the right to be informed, not to inform. In that respect, an institutional change that gives more power to patients (and need not be necessarily related to EBM), may help.

  • Prag Reply

    Hi Michael,

    That was a great post. I’m a surgical resident with interest and research involvement in medical ethics. I’d like to know if this idea of “patient-as-subject” and “patient-as-object” are your ideas? I’d like to use these terms and would like to know whom to cite or quote or acknowledge. I also have some questions with which you can help me. Unfortunately, I can’t find your email id, mine is pragt@me.com. Please ping me an email and I shall contact you with more details about my work.

    Thank you! great post! probably the most sensible three paragraphs in medical ethics i’ve read in a really long time.

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