Is the Patient Difficult? Or Are You Not Listening?

Is the Patient Difficult? Or Are You Not Listening?

Don S. Dizon, MD, FACP, FASCO

@drdonsdizon
Apr 23, 2019

Originally published in "Discussions with Don S. Dizon" on The Oncologist.

As a doctor, there is an experience that all can relate to. It concerns that particular patient who comes in with not just one concern, but a litany of them. They require more than the prescribed 15 minutes of visit time, and we sit and listen, try our best to console and guide. Yet, for some patients, it never seems to be enough. Our suggestions are challenged, our views questioned. They leave unhappy, and we are left feeling inadequate. There is a knee-jerk response that occurs, and I’ll be the first to admit it happens to me: the tendency to label that patient as “difficult.” There are certainly other terms that may make their way into the record of that patient, like “overly anxious” or “hypochondriacal”—terms that, once included, do more to characterize that patient to other clinicians they may see in the future. It’s the code of medicine that clinicians use to “forewarn” each other. And it’s certainly unfair.

I remember a patient from long ago, when I was starting practice. She had been treated for ovarian cancer. It had terrified her, but she made it through surgery and chemotherapy. I was so happy for her when that last treatment was administered. “You’re finally done,” I exclaimed. “Put it all behind you, and move on with your life.”

“Really?” she said. It was her only response—and one I had not anticipated.

We looked at each other for a bit, and then I continued. “Look, no one knows what the future will hold, and yes, the odds are high you will have a relapse. But, it’s not 100%. We will watch you closely, so leave your cancer here, and try to be happy it’s finished.”

She smiled and walked out. In the months that followed, though, I would get messages from her, infrequently at first, but within a few months she was calling often. My nurse would come in and tell me about them—concerns about various pains or a cough, general worry that cancer had moved to her lungs, her liver, her bones. She wanted x-rays and CT scans, repeat labs with each call. My nurse would call her back, provide advice we agreed on, and do her best to address the symptoms. I would see this patient every 3 months, where we would rehash the notebook of symptoms she had faithfully recorded since the last visit. We would discuss the pros and cons of imaging. Each 15-minute visit would last over 30 or 45 minutes, and at each visit, I would end it the same way—“All things suggest you’re fine. Stop worrying so much, and try to smell the flowers.” Each time, she would smile, get up, and walk out.

Ultimately, she fired me. She told the patient advocate at the time that I was dismissive and didn’t take her seriously. To be honest, I was relieved. She was “incredibly difficult.”

This happened a very long time ago and since that time, I like to think I’ve evolved. I now realize that going back to a “normal” life is not an option after you’ve been treated for cancer. Everything changes: how you view life, how you see your place in this world, how you relate to other people. Cancer forces you to evolve into someone different. And, in that first year post-diagnosis, there is also an emotional response to this real threat of a mortal illness—fear of recurrence. Studies suggest that up to 20% of those treated for cancer have severe symptoms associated with fear of recurrence, and in 70% the symptoms are of moderate severity. As I’ve learned more about this, I also looked back on this particular woman who had been through “curative” treatment for her ovarian cancer and I learned, albeit late, that she was suffering, and I failed to recognize the symptoms consistent with fear of recurrence: the hypervigilance, the paralyzing anxiety, the frequent need to be heard.

Fortunately, we have made strides to help guide our patients in how to manage fear of recurrence, but it begins with calling it by its name. While I’ve learned it’s important to not only hear our patients but to really listen, it’s also important to recognize my own reactions. Now, if a patient is making me feel anxious, I know to pause, and to ask myself, “What’s really going on here?” I now know that patients aren’t calling our offices because they are bored. They are often calling because they don’t know where else to turn. And if I don’t have the time to sit, listen, and counsel, then it’s my job to find the right person who can help, whether it be the phenomenal social workers, psychologists and psychiatrists, or the palliative care physicians that are the extensions of supportive care that is implicit in the care of all patients with cancer.

I never saw that patient again. She left the institution and established care outside of the city where I practiced. But, she taught me an important lesson in doctoring. I wish I could tell her how much she taught me, about empathy and about how cancer is more than just biology. But mostly, I wish I could tell her that I’m sorry.

She deserved better from me. I know that now.

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