Why it’s so hard to be a medical patient

Patient Dignity Question offers an opportunity for humanizing conversation with doctors

While being treated for hematologic cancer, the former head of a department of medicine told me he wished he could hang a sign on his headboard, reading PIP: Previously Important Person.

Despite extraordinary achievements and status, being a patient made him feel like an amalgam of parts; limbs, bodily fluids, organs and orifices, all now on display.

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

Whatever concern or ailment brings you to seek medical care, 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.

Who you are as a person is highly unique; never has there been, nor will there ever be one exactly like you. Being a patient, on the other hand, is based entirely on things that are generic. 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 health-care system, the focus of attention shifts from who we are, to whatever ailment or problem we are now facing.

This shift puts identity in jeopardy.

It doesn’t have to be this way. One approach beginning to take hold is 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 fiveto-10-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?

Answering the PDQ lets patients describe how they want to be seen or understood as a person. These conversations are summarized into a few paragraphs, and with the patient’s approval, placed on their medical chart.

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 pandemic, the daughter of a women on a ventilator shared that her mother had survived the death her first child and now was a community leader. She said responding to the PDQ gave her a way of telling her health-care team that her mother “was no ordinary person.”

These kind of disclosures forever change the health-care provider’s lens, bringing an appreciation of who patients are as persons. This is not only good for health-care providers, but 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.