The ASCO Post is pleased to reproduce installments of the Art of Oncology as published previously in the Journal of Clinical Oncology. These articles focus on the experience of suffering from cancer or of caring for people diagnosed with cancer, and they include narratives, topical essays, historical vignettes, poems, and photographic essays. To read more, visit jco.org.
My most embarrassing communication failure occurred shortly after I arrived at a new institution many years ago. I was on the inpatient oncology service and took over the care of a woman in her late 50s. She had been admitted to the medical intensive care unit with advanced, diffuse large B-cell lymphoma, and the previous oncology team had started treating her with chemotherapy. As expected, her disease responded briskly. By the time I came on service, she was ready to be transferred out of the intensive care unit to a regular floor. And that is when things went awry.
Timothy Gilligan, MD
When I met the patient, we discussed her diagnosis, prognosis, and the treatment plan for her cancer. My goal was to cure her, and there was a good chance this could be achieved. However, with her family around her, she told me that she did not want any more chemotherapy. I found this baffling. So many patients with advanced cancer wish we had a cure to offer, and now this patient was refusing curative treatment.
We started having daily conversations about the prognosis of her cancer, the possibility of cure with treatment, the certainty of death without treatment, but I was not getting anywhere. And I was becoming increasingly frustrated that I was failing to persuade my patient to accept a treatment that would probably cure her. Part of my frustration was the difficulty discerning the reasons for her refusal of chemotherapy. In part, she felt so much better after one cycle that she did not seem to believe she needed more. And, in her mind, the prednisone seemed to be doing a fine job of controlling her disease. My impression was also that she trusted Jesus to cure her more than she trusted me. But I never felt like I fully understood her position.
A cancer diagnosis can strip people of parts of their identity, their ability to do the things that make them feel like themselves.— Timothy Gilligan, MD
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After a few days, I was called into the office of the director of our cancer institute. The patient had contacted him and requested a different oncologist. She had said that I was yelling at her. I know I am not a yeller (even my children tell me that, often in the form of the question “Why don’t you ever yell?”), but I do not doubt that she experienced my repeated attempts to persuade her to consent to chemotherapy as a form of yelling. (I would confess to badgering.) She ended up transferring her care to a different hospital. I never learned what happened to her, nor the reasons for her decision to decline treatment. And the episode still stings as having failed my patient, even though my boss was kind and gentle in how he managed it.
Learning Who Patients Were Before Cancer
Later that year, I took a course for faculty on how to teach communication skills to oncology fellows. My main mentor there, Dr. Walter Baile, advised me to start interviews with new patients with cancer by taking a social history. He reflected on how a cancer diagnosis can strip people of parts of their identity, their ability to do the things that make them feel like themselves. They may be unable to work, to care for their families, to play with their children, to participate in their hobbies, to have sex, and to eat their preferred foods. Their appearance may be altered either by the disease or by cancer treatments. He argued that by talking to them about who they were before they were ill and about what their illness had changed for them, we not only could understand them better, but we could also help them to at least briefly reclaim their sense of who they were. Plus, they would know that we saw that identity, too, and not only their identity as a patient.
Ironically, the very first day after I returned from the first part of this course, I found myself with another patient with a curable cancer who was refusing chemotherapy. The oncology fellow said to me, “I’m so glad you’re back. We have a patient with testicular cancer [my specialty] who won’t let us start chemotherapy.”
“What do you know about him?” I asked.
“He has seminoma with metastases to the retroperitoneal lymph nodes,” she said.
“What else do you know about him?”
“The cancer started in the left testis, and the nodal mass is about 8 cm in diameter,” she said.
“Anything else?” I asked.
“He doesn’t have any other metastatic disease as far as we can tell on scans, and his tumor markers are normal.”
Such was the conceptualization of the patient. It was an illuminating reminder of how many of us have been trained to view the people we take care of. Armed with my new training, I suggested we find out who he was aside from being someone with cancer.
Sometimes a relationship [with a patient] was more powerful than logical arguments.— Timothy Gilligan, MD
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The first day I met him, we barely discussed his disease. It turned out that his father’s cancer had just relapsed and was now incurable. His mother had tried to cancel his orchiectomy, saying “Jesus will cure my son.” His girlfriend had thrown him out of the apartment where they lived, telling him that she had a new boyfriend, was pregnant, and was not sure who the father was. He had a new girlfriend, and he was wondering who would come visit him in the hospital. He was also wondering whether he wanted to do sperm banking to preserve his fertility. In the setting of this chaos in his life, his cancer was not the most pressing issue on his mind. In a sense, every major figure in his life was abandoning him in some way. He was wondering who would show up now that he was sick.
We discussed all this the first day, and I let him know that I agreed with his other doctors that he needed chemotherapy and that I was hoping to discuss that with him the next day. When I saw him the following morning, it felt like there was the beginning of a relationship, like a seed of trust had been planted. The day after that, he started chemotherapy, and, many years later, he is still in remission.
I learned my lesson: even if my only goal was to get my patients the best medical outcome, communication skills were essential, and sometimes a relationship was more powerful than logical arguments. It is embarrassing that I was several years into my life as an oncologist before learning such a basic competency. But when I trained, the emphasis was on learning the disease and the treatments, not learning to communicate with patients. I am delighted that personalized medicine has become so popular recently, though I think it means something different in the genomics world. What I learned from these patients was that one way to personalize medicine is to get to know the person. ■
At the time this article was published in the Journal of Clinical Oncology, Dr. Gilligan was practicing in the Department of Hematology and Medical Oncology, Taussig Cancer Institute, Center of Excellence in Healthcare Communication, Cleveland Clinic.