Why is being a patient a difficult pill to swallow?

Harvey Max Chochinov

While being treated for an aggressive hematologic cancer, the former Head of a Department of Medicine at a large teaching hospital told me he wished he could hang a sign on his headboard, reading P-I-P: Previously-Important-Person. Despite extraordinary achievements, skills, credentials, and status, being a patient made him feel like an amalgam of parts; limbs, bodily fluids, organs, and orifices, all now suspect, some more wayward than others — and most, for his taste, far too readily on display.

Why is being a patient such a difficult pill to swallow?

Besides whatever concern or ailment brings you to seek medical care, there is something about the very nature of being a patient that deeply rankles. Whether trying to arrange a medical appointment, waiting to be seen in a clinic or hospital, or being examined under the watchful gaze of a healthcare provider, being a patient disrupts our sense of intactness, gnawing away like an existential termite.

At its core is the erosion of personhood and a feeling that identity is under attack, threatening to displace the essence of who we really are. 

It doesn’t have to be this way.

Our sense of who we are as people is highly individualized, based on personal experiences and relationships; affiliations, attitudes, culture, beliefs, abilities; opportunities and connections; inclinations and foibles. In other words, who you are as a person is highly specific and unique; never has there been, nor ever again, will there be one exactly like you. Being a patient, on the other hand, is based entirely on things that are generic.

Bodily parts are supposed to behave in exact and predicable ways, irrespective of who their owner happens to be. With all due respect, whether prince(cess) or pauper, poet or pilot, your bits and bobs are pretty much identical, in form and function, relative to everyone else’s.

And herein lies the problem with being a patient. The moment we enter the healthcare system, the focus of attention shifts from who we are, to the ailment or problem we are now facing. This shift puts identity in jeopardy.

A long-time dialysis nurse once told me she eventually came to think of patients as kidneys on legs. Patienthood eclipses personhood, casting a shadow that undermines the essence of who we are. This is bad for patients and their families; it is also bad for healthcare providers since emotional disconnection and objectification of patients is a harbinger for professional burnout.

One approach designed to decrease this kind of existential trauma is beginning to take hold, coined the Patient Dignity Question (PDQ). The PDQ asks patients, “What do I need to know about you as a person to take the best care of you possible”? This question forms the basis of a brief five-to-ten-minute conversation, focused on personhood. What matters to you? What are your core beliefs? What or who are you most worried about? What roles and relationships matter most?

In answering the PDQ, patients are being asked how they want to be seen or understood as a person by their healthcare team. These conversations are summarized into a few paragraphs, and with the patient’s approval, placed on their medical chart.

While mostly used in patients with serious illness, the PDQ is relevant across all of medicine.

Whether you are being seen for routine medical care, or find yourself moving towards the end of life, or somewhere in between, who you are and acknowledgement of who you are as a person, matters. And the things that people disclose by way of the PDQ profoundly change the way healthcare providers see them. I’m a survivor of childhood abuse. My son is battling cancer. I am afraid to die alone. I am a former department head of medicine.

During the COVID-19 pandemic, the daughter of a women on a ventilator in intensive care shared that her mother had survived the likely murder of her first child and was a spiritual leader in her community. She said that responding to the PDQ gave her a way of letting the healthcare team know that her mother “was no ordinary person.”

These kind of disclosures profoundly and forever change the healthcare provider’s lens, bringing an appreciation of who patients are as persons, above and beyond whatever ailment brought them to medical attention. This is good for healthcare providers, helping stave off emotional indifference that can lead to professional burnout, while restoring human connection with the potential for them to be more whole themselves.

It is also good for patients and families, ensuring that patienthood doesn’t overshadow personhood.

Being a patient is hard, especially when it undermines your feeling that you are still you. That, it turns out, is the hardest pill to swallow of all.

Dr. Harvey Max Chochinov is a distinguished professor of psychiatry at the University of Manitoba, and author of Dignity in Care: The Human Side of Medicine, recently published by Oxford University Press.