Discussing Patients' Private Lives for Better Cancer Care

Bishal Gyawali, MD, PhD


December 18, 2020

Details of the patient in this article have been altered slightly to protect her identity.

When I first met Rebecca, a woman around 50 years old who had been diagnosed with metastatic rectal cancer, I asked if she wanted to know her prognosis. She wasn't interested. I did, however, tell her that her cancer was incurable and then I started her on chemotherapy plus the molecular antibody panitumumab.

Her tumor responded well to treatment, but when I gave her the good news, she didn't smile or even look happy. At first, I thought it was natural because I had told her that the intent of treating her was to prolong her survival and improve the quality of her life, so she knew that the tumor would never disappear and that she would never be cured.

Still, most patients are happy to hear that their tumor is responding and that they can expect to live a longer life. So I started to wonder whether there was something else going on.

A Fine Line

There is a fine line between offering support as an oncologist and intruding on patients' private lives. And discussing nonclinical aspects of patients' lives demands ample time and an appropriate physician-patient relationship.

During a less busy clinic day, I decided to spend some time talking with Rebecca, with the hope of understanding her unusual demeanor. Was she dealing with emotional issues beyond her diagnosis of cancer? One day her treatment would stop working, and if I didn't know her current state, I wouldn't know how to discuss this bad news. Thankfully, after some chatter, she started to open up.

She told me she had a boyfriend who died of glioblastoma a few years ago. While he was being treated, he was put on steroids for cerebral edema that made him very sexually active. I soon realized that she thought she had received cancer cells in her rectum that were shed during sexual activity with her boyfriend while he was under treatment. This, she believed, was why she had rectal cancer. It was apparently the main thing that troubled her. She had accepted her cancer diagnosis, the need for chemotherapy, and the possibility of a dismal prognosis — but the idea that it was all brought on by her past sexual activities was too much to take.

I reassured her that her cancer was not sexually transmitted and that there was absolutely no way that glioblastoma cancer cells would transmit from one person to another and end up as rectal cancer. She immediately seemed relieved and her facial expression changed. I saw her stress-free for the first time. On her next visit, she looked less worried and seemed more interested in the effects of her treatment and prognosis.

Suffering Silently

This incident caused me to reflect deeply. How many of my patients were suffering silently from issues like these?

Without this discussion, Rebecca would have probably passed away with a nagging feeling of guilt and anger that was based on a false inference. Could it not be argued that ameliorating her anxiety may have provided more value to her as a cancer patient than the addition of panitumumab to her chemotherapy?

Unfortunately, taking the time to explore deeper issues with your patients does not pay — not financially nor even professionally. If you spent time like this with every patient, you would be looked upon as an inefficient doctor. Reflecting on stories like Rebecca's, though, there is so much we could do as physicians to improve patients' lives that has nothing to do with prescribing more medications.

Time Is Not the Only Constraint

Yet I am also enormously grateful; at least we can have these conversations in the West. When I was practicing in Nepal, I had time to discuss only three things with my patients and their families: whether any treatment for their cancer was available in Nepal; if so, how much it would cost; and how long they would have to stay in Kathmandu for treatment. In a public hospital practice, there wasn't even time to discuss the side effects of many cancer therapies.

It bothers me now to think about how many patients in Nepal may have suffered unnecessarily in much the same way Rebecca had. Given the poor literacy in Nepal compared with Canada, where I now practice, I can only imagine that it must have been a high number.

Time wasn't the only constraint. Cultural context in Nepal also prevents discussions like these. A female patient in Nepal would never feel comfortable bringing up such issues with her physician. And as a male doctor, I would never be able to inquire about the sexual health of a female patient in Nepal. That doesn't mean that cancer patients in Nepal do not have these same issues, only that they keep them to themselves and suffer silently. If Rebecca were a patient in my clinic in Kathmandu, either I would not have had the time to notice her unhappiness or I would have noticed but not acted upon it. Even if I did, she would not have brought up the real reason.

How Do We Address These Issues?

I do not have any specific solutions to offer here. My personal, evidence-free ethical recommendation is that we present ourselves to patients as physicians who are open to any sort of discussion without making judgments. Ultimately, however, the decision to open up is entirely with the patients. We can't force them to discuss something they are not comfortable with.

Medicine is clearly much more than matching a symptom with a drug. A story likely underlies each symptom. Building relationships and uncovering these stories may, in certain situations, improve a patient's life more than most of our marginal cancer drugs would.

I would love to know how my colleagues in both high- and low-income countries address these issues. Please provide your perspective in the comments section.

Bishal Gyawali, MD, PhD, has lived and worked as a physician in Nepal, Japan, the United States, and Canada. He is currently an assistant professor in the Department of Public Health Sciences, a scientist in the Division of Cancer Care and Epidemiology, and a clinical fellow in the Department of Medical Oncology at Queen's University in Kingston, Ontario, Canada, and is also affiliated faculty at the Program on Regulation, Therapeutics, and Law in the Department of Medicine at Brigham and Women's Hospital in Boston. His clinical and research interests revolve around cancer policy, global oncology, evidence-based oncology, financial toxicities of cancer treatment, clinical trial methods, and supportive care.

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