I’ve come to realize having an automatic word filter is one of my greatest blessings. It becomes quite useful when, in the middle of rounds, a patient’s single, monosyllabic response inspires such a flurry of mismatched curse words that only a properly formed filter can save my dignity. What exactly did this patient say that stunned me so violently?
My attending had asked him a straightforward, albeit grim, question. “Do you know you have cancer?”
The patient had gawked at her, his head slightly reeled back, eyes wide. “No.”
His response wouldn’t have shocked me had he not been diagnosed with prostate cancer seven years ago, had he not had multiple prostate biopsies demonstrating super high Gleason scores, had he not continued following up with his primary care physician, who took routine PSA measurements year after year. When we think of health care and people “falling through the cracks,” we nod our heads solemnly at the data, the people who didn’t follow up in clinic and ended up worse than before, the poor who couldn’t afford insurance and so stayed away until they couldn’t tough it out anymore. You know. Those people.
But this patient wasn’t one of those statistics. He had kept his appointments, had done the recommended testing — how could he not have known he had cancer? What kind of health care system exists where a patient gets continuous specialized tests without understanding their grave meaning?
Surely, I thought as I returned to my base pod, surely something somewhere in the system failed him. Doing procedures for seven years without knowing why — is this what poor health literacy was? Had all his doctors used so much jargon he couldn’t understand?
No, that explanation seemed too simple. Jargon or not, the word cancer is universally known and feared.
Perhaps it was the severity of his disease he did not understand. Denial could have played a role, too, but when your PSA grows year by year, when your cancer reaches a Gleason score of nine, it would seem to me denial would have one hell of a job maintaining ignorance. It’s not entirely farfetched that an uneducated man with cancer, having not undergone any dramatic chemotherapy or gory surgery or other TV drama ready procedure, could have possibly underestimated the scale of his illness. And even if he were in pure denial of his aggressive cancer, shouldn’t the health care system have picked up on this and consulted psychiatry or a therapist or someone to help re-explain his situation to him?
I spent many hours thinking about this case. Had the health care system failed this man, who was either in obvious denial of his illness or genuinely uninformed about the severity of his cancer? Or had his PCP and other players in the field tried their best to educate him but failed? I don’t think I’ll ever get a nice, clear answer. I’d have a better chance — and a bigger waistline — winning a chocolate statue of myself. All I can say for sure is that after our team treated him for dehydration, malnutrition, and other issues that arose from his metastatic cancer, our patient asserted he would see the appropriate doctors for his follow up.
Judging by his recent medical records, he did.
Somehow, his inpatient stay with us got through to him regarding the gravity of his illness, but I can’t help but wonder: was it too late? Yes, his condition has improved, and he’s gained some weight, putting meat on his cachectic frame, but let’s face it: he has metastatic prostate cancer. Had he known exactly what his rising PSA levels had meant, would he have elected to have his prostate removed, thus avoiding the death sentence he has now?
The health system helped him in the beginning by providing him with a diagnosis and at the end by treating the impacts of his illness, but to me, perhaps due to my naivety in believing denial can’t be the sole explanation for this story, we let him down in the middle of his journey, where he should have had our support and attention most, where he could have healed.
Or I could be wrong.
Maybe my more cynical residents are right. Maybe he was in seven years of denial, and either no one picked up on it or couldn’t get through to him. I guess all I can really say about the impact of the health care system on this particular patient is that it was 100 percent certainly ambiguous.
And that’s terrifying.
Believing the system could have had a hand in all these complications, that a patient with a grave disease could have not understood the severity of his disease, that a patient could have been clueless as to the significance of his tests, that a life saving procedure could have been passed up due to a patient’s poor medical knowledge, that signs of denial could have been missed by professionals who regularly saw their patient. I’ll say it again. Terrifying. None of these “could’s” should exist, and yet they do.
People love asking and reflecting on how the health care system plays a role in the outcome of patients. Truth is, for this poor man, with the information I have, the only information I’ll probably ever have, I don’t know. But with all the “could’s” that come to mind, does that even matter?