“Congratulations on becoming a long-term survivor!” cheerily exclaimed my radiation oncologist during a follow-up visit 18 months after the conclusion of my six-week, daily protocol of combined chemotherapy and radiotherapy. In June 2016, I was diagnosed with the aggressive and deadly brain cancer glioblastoma. My fingers strike these keys 28 months, give or take a day, “post-diagnosis,” for a disease with an overall median survival of 18 months. Line me up with 100 others diagnosed with glioblastoma around the same time and more than 50 of us are by now dead. There is no curative therapy for this advanced cancer, and the five-year survival rate is fewer than 10%. In these two years, I have struggled under the weight of this uncertain and angst-ridden period of so-called survivorship: a grey zone—pardon the pun—of rehabilitative therapy, intermittent chemotherapy, daily symptom management, and confronting the slow and steady march of co-morbidity and mortality. In the space between seizures and imaging scans, motor impairment and maintaining a sense of normalcy for our family in the limit of terminal illness, I continue to dedicate a bulk of my intellectual resources to the practice of philosophy. I take my cue from Havi Carel (2013) who notes that, unlike philosophizing generally, which is “volitional and theoretical,” the anxiety and uncertainty presented by attention to illness triggers “a radical, even violent, philosophical motivation.” I am so motivated, and I argue we must reclaim the patient’s subjective voice and apply this ineliminable perspective toward caring for persons facing chronic or advanced illness; hereafter, ‘the seriously ill.’
Subjective accounts of the illness experience have gone absent from the biomedical model of contemporary healthcare, to the detriment of clinical care. What I call for is a project of reconciliation by which the purportedly objective scientific image, including biomedical research and care, is brought into close quarters with the subjective illness experience. The outcome of such a project, I hope, is to motivate a promising research program that is at once philosophically compelling yet “metaphysically modest.” (Carel (2011) indicates phenomenology is metaphysically modest, as it is a philosophical method, not a systematic account, that focuses on the data available to human consciousness, while bracketing metaphysical debates and ontological commitments to the existence of external objects.) Narrative theory plays an important role in restoring the problematic dis-unities that here exist.
Researchers and clinicians are trained in a discipline that prizes reductionism, that is, seeking causal explanations at the lowest level of biological complexity. Yet explanations grounded in the reductionist framework fail to respond adequately to the chronic needs of the seriously ill, which are complicated, contingent, and intersubjective, or having to do with the relation between a person’s body, the world, and their social interactions. A subjective account of the illness experience does not seek to undermine or rebut biological explanations of disease. Though, clinicians are encouraged to revise their epistemic framework to consider the social implications of serious illness, beyond socio-economic factors gleaned through social determinants of health, which usually manifest as additional data points in the empirical collection of patient history. Rather, giving voice to illness offers an altogether innovative perspective to treat a person and their illness, not only the disease. Call this the Oslerian Imperative, after the physician and medical educator Sir William Osler who instructs it is the good physician who treats the disease, but the great physician who treats the patient who has the disease. I introduce this heuristic, the Oslerian Imperative, if only to label a core insight from the history of modern medicine that underwrites this effort to restore and uphold the patient voice in the interest of clinical care.
Treating the body using the reductionist framework of contemporary medicine, the subjective self—the what-it’s-likeness of illness—is neglected. The wholesale experience of illness resists reduction to the model of clinical care as currently practiced. Contemporary medicine touts sophisticated diagnostic protocols, increasing success profiling molecular “biomarkers” for many diseases, and improved prognostication using machine learning. Each tool offers the investigator a deep and narrow lens for plumbing the depths of disease etiology, proliferation, and treatment. The mechanisms of disease exist in the details; details examined at the lowest level of biological complexity, representative of the reductionist methodology gaining dogmatic adherence from the molecular revolution onward.
Pace technological innovation to complement the reductionist stance, the experience of illness is not detectable through light microscopy, imaging, or genomic sequencing—each of which is a tool employed in diagnosis and care. Only through the voice of the patient, the subject of the experience, may we understand disease replete with nuances, social impact, trauma, and risks to axiology. The structures of healthcare institutions are underpinned by biomedical approaches that focus on the biological rather than existential aspects of illness, and therefore lower the level of attention paid to the subjective experience of being ill (Kidd and Carel 2017). Neglecting to account for subjective experience turns out to be foolhardy. Researchers and clinicians are learning more about the impact of existential un-ease, defined as allostatic load, or stress burden, and its indication for increased incidence of co- and multi-morbidity (Tomasdottir, et al. 2016). This research indicates a clinical failure to address the human (existential) predicament and results in poor health outcomes. Tomasdottir and colleagues suggest it is “subjective experience, not objectively quantifiable events, that becomes biologically inscribed.”
This insight is difficult to incorporate into clinical care, given its resistance to easy measurement. Scholars working within the domain of narrative medicine recognize this difficulty to accurately capture an ill person’s symptoms as mere data points, but narrative medicine “does more than simply raise the issue that standard medical practice is reductionistic,” writes Murphy, Choi, and colleagues (2016). Rather, they call for a new methodology to make salient the relevant patient information. “Data are not easily observed but enmeshed in perspectives, conflicting interests, and habits.” The “promotion of narrative medicine,” advances an “epistemology that is not pursued regularly by those who critique reductionism.” Here we recognize the requisite pluralism to carry out the Oslerian Imperative:
A naturalist framework would suffice were the aim of medicine to diagnose and manage disease. Period. However, as the profession’s mandate is to cure and care for diseased human beings, this frame of references is insufficient: it does not allow for an exhaustive inquiry into human nature (Kirkengen, et al.)
These vantage points—clinician and ill person—though divergent, might be made compatible, with systemic reforms to epistemic norms governing medicine. Applying these considerations to clinical care, we must examine the subjective experience of the ill person to judge whether that vantage point stands on equal footing with the clinician’s. If Murphy, Choi, and colleagues (ibid.) infer correctly the difficulty of interpreting patient ‘data,’ then we may worry the ill person’s perspective is inferior, if for no other reason than it is missing from the clinician-patient interaction. Without malice, by virtue of the clinical encounter, the patient’s epistemic value is undermined. Such is the case presently in the practice of modern healthcare. This problem is not new: Williams (1984), studying illness narratives, observed that patients reporting illness do so bound by the definition of illness provided by the biomedical model, which omits a subject’s relation to the world by employing “a reduced range of clinically ascertainable factors.” Failing to respect the vantage point of the ill person introduces epistemic injustice.
Writing almost three decades after Williams, Kidd and Carel (op cit.) note nearly the same form of epistemic injustice in the clinical encounter. They write, “[Physicians] often complain that patients provide medically irrelevant information, make odd statements and superfluous remarks about their condition, or otherwise fail to contribute epistemically to the collection of medical data.” Like Williams’s “clinically ascertainable factors,” Kidd and Carel conclude, “[J]udgments about the epistemic credibility of ill persons are too often prejudicial and generated and sustained by negative stereotypes and structural features of healthcare practice.” The biomedical model shapes the clinical encounter, guides the collection of data, and so restricts the transmission of the ill person’s subjective experience into meaningful information to direct care. Divergence between competing accounts of what counts as meaningful or relevant for care now becomes clear. Neither reductionism nor phenomenology is alone sufficient to execute the Oslerian Imperative. A methodological pluralism is required.
The imperative demands both disease and person are brought within the scope of consideration, and we see what counts as meaningful is contingent on the vantage point of the agent. it comes only by concerted effort that we revise our own epistemic framework to consider others’ experiences. The practice of narrative medicine aids this effort because it offers a new epistemic framework to license how knowledge might gain legitimacy.
The methods of biomedicine lose sight of the crisis of meaning arising from bodily illness, a meaning that must be felt by someone, a subject! Kirgengen, Ekeland, and colleagues’ note, “A key component of sickness is suffering: that the person is hampered in proceeding with her or his subjective life project.” Axiology and meaning are under assault.
The biological process of disease utterly fails to communicate anything meaningful about what it is to be sick. The seriously ill person is fraught with anxiety from each of these sources, including conflict between the ill body and pursuit of life projects, the axiology of personhood, and a framework for disease intervention that fails to realize the person from the patient; the subject from the object. Carel (2013) points to many of these problems as fracturing the seamless unity of body as object and as subject.
I conclude should the subjective accounts of the illness experience be restored in the biomedical model of contemporary healthcare, through systemic reform, including medical education, and the promotion of patient narratives, both clinician and ill person may find compatibility to the benefit of clinical care.
References
Carel, Havi (2008). Illness. Routledge.
Carel, Havi (2011). Phenomenology and its application in medicine. Theoretical Medicine and Bioethics 32 (1):33-46.
Carel, Havi Hannah (2013). Illness, phenomenology, and philosophical method. Theoretical Medicine and Bioethics 34 (4):345-357.
Charon, R., Banks, J. T., Connelly, J. E., Hawkins, A. H., Hunter, K. M., Jones, A. H., … & Poirer, S. (1995). Literature and medicine: contributions to clinical practice. Annals of internal medicine, 122(8), 599-606.
Kidd, Ian James & Carel, Havi (2017). Epistemic Injustice and Illness. Journal of Applied Philosophy 34 (2):172-190.
Kirkengen, A. L., Ekeland, T. ‐J., Getz, L., Hetlevik, I., Schei, E., Ulvestad, E., and Vetlesen, A. J. (2016) Medicine’s perception of reality – a split picture: critical reflections on apparent anomalies within the biomedical theory of science. J Eval Clin Pract, 22: 496–501. doi: 10.1111/jep.12369.
Murphy, John W., Jung Min Choi, and Martin Cadeiras. “The role of clinical records in narrative medicine: a discourse of message.” The Permanente Journal 20, no. 2 (2016): 103
Tomasdottir MO, Sigurdsson JA, Petursson H, et al. Does ‘existential unease’ predict adult multimorbidity? Analytical cohort study on embodiment based on the Norwegian HUNT population. BMJ Open 2016;6:e012602. doi:10.1136/bmjopen-2016- 012602
Williams, Gareth. “The genesis of chronic illness: narrative re‐construction.” Sociology of health & illness 6, no. 2 (1984): 175-200.
Adam Hayden
Adam Hayden, MA, Indiana University Purdue University Indianapolis (IUPUI) is a philosopher of science, a champion of humanities-informed practices in medical education, and a person living with brain cancer (glioblastoma). He serves on multiple national advisory councils and committees focused on patient engagement and advocacy. He is a regular guest lecturer at the Indiana University School of Medicine, and he serves his university as research assistant to the Department of Philosophy, Indiana University School of Liberal Arts at IUPUI.
