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DEPARTMENTS: Insights

Rethinking “Patient” in Cancer Nursing Research

Kagan, Sarah H. PhD, RN

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doi: 10.1097/NCC.0000000000000881
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‘Who here is a patient?’ I ask groups of clinicians and scientists I meet. The response is predictable. Mindful of roles as nurses or scientists, almost no one says, “I am a patient.” A few—most being treated for chronic and often serious conditions—respond affirmatively. The truth, and with it an understanding of power, visibility, and inclusion, escapes most everyone.

In reality, we are all patients. We all receive healthcare, assuming the role of patient if only briefly once a year. Yet what it means to be a patient is pushed from memory in the moment. To recollect that meaning is to feel afresh discomfort, anxiety, and confusion, but more rarely comfort. The experience of patient is at once unique—who I am—and universal—how I am human. Forgetting our inner patient is not simple oversight but a complex social phenomenon.

Responses to my question about our identities as patients are predicated on social roles and power dynamics. The politics of power reach deep into contemporary healthcare. Structures and processes reinforce hierarchy and control. Increasingly, research reveals the extent to which power dynamics undergird structural and individual discrimination and depersonalizing experiences, while perpetuating poor outcomes throughout healthcare.1,2 Yet, a fundamental element of this dynamic—that of patient—garners scant attention.

The language of patient sits, unexamined, across cancer care and science. We aim to improve patient experience by being patient-centered. We recruit patients for our studies. We typically fail, however, to explicitly recognize that patients are people filling a social role in that moment. In our roles as nurse scientists, we strive for work-life balance. The corollary of patient-life balance seems almost absurd. Nonetheless, that absurdity underscores the extent to which the person is invisible in cancer care and science.

Uncritical use of the term patient renders the person in cancer care invisible. Using patient in a study works well if the interest lies, for example, in describing interactions with nurses. However, using patient in a study of self-care or family functioning is arguably flawed given the focus on life outside of cancer care. After all, patients are not patients when at home.

Preponderant use of patient quickly slides into depersonalization, risking discrimination. Patient implies vulnerability, problems, and needs to be met with the authority of our systems of care. Authority is an expression of power, clearly seen in compliance with—or adherence to, in contemporary rephrasing—treatment, education, and care we use to address patients’ problems and needs. To view patients as merely the sum of problems and needs is to strip them of personhood, objectifying the individual and categorizing by nominal characteristics. Discrimination often emerges in the “too” judgment linked to patient. In my area of research, “too” is framed as “the patient is too… [old, frail, impaired, dysfunctional].” All human beings are vulnerable and experience problems and needs. To see any individual as a tally of those qualities makes them less than they are. All people also possess strengths, accomplishments, and mutuality.

Overcoming limitations of patient in research challenges us, beginning with realizing risks associated with using an apparently innocuous, factual term. Embracing our own inner patient paradoxically allows us to begin untangling complexities of patient in cancer nursing science. Comprehending our own experience of patient brings us closer to knowing that we cannot comprehend all patient experiences. Reflexively, we become better appraisers of what we aim to study and how patient pertains.

With our inner patient firmly in mind, untangling patient in cancer nursing science then prompts action. First, replace patient with person or person living with or after cancer unless patient is specifically germane. Next, consider appositeness of other social labels. For instance, age, race, and sex are frequently coupled with patient—“older adult patient” is one I often encounter—when generational, racial and ethnic, and gender identities are more relevant to many cancer nursing studies. Lastly, conducting research involving persons living with and after cancer, anchored in personhood, warrants reflecting on their participation in our science. Honoring participation in full merits including new roles of advisor and coinvestigator to redress power dynamics and fulfill the promise of nursing for better cancer care.

References

1. Altman MR, Oseguera T, McLemore MR, Kantrowitz-Gordon I, Franck LS, Lyndon A. Information and power: women of color's experiences interacting with health care providers in pregnancy and birth. Soc Sci Med. 2019;238:112491. https://doi-org.proxy.library.upenn.edu/10.1016/j.socscimed.2019.112491.
2. Sharma M. “Can the patient speak?”: Postcolonialism and patient involvement in undergraduate and postgraduate medical education. Med Educ. 2018;52(5):471–479. https://doi-org.proxy.library.upenn.edu/10.1111/medu.13501.
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