When Patients Refuse Treatment for Their Cancer

Quoting statistics seemed to be a refuge to me. The objectivity of the numbers provided a hiding place and a shelter, and they helped me maintain the emotional distance that my profession demanded.

She repeated, “Can you cure me?” I responded, “Well, I cannot guarantee a cure, but we can try.”

Her History

She had received 3 cycles of neoadjuvant chemotherapy for her breast cancer and then decided that it was not for her. She did not follow up with her subsequent appointments. Then, she arrived one day in the emergency department, extremely short of breath. She had a pleural effusion that almost completely filled her right thorax. The pleural fluid was drained and she felt much better. Next was the question of treatment of the breast cancer. The medical team discussed the issue with her, but she insisted that she did not want any more treatment. That is when I first met her, as an oncology fellow on the consultation service.

I was briefed about her by an intern. There I was, a firstyear oncology fellow in my not-so-crisp white coat, with a smile hiding my exhaustion as I walked into her room. She was a black woman in her early 50s (but looked much younger), with beautiful, carefully arranged dark hair, smiling and cheerful. She did not wear hospital clothes but rather a bright and colorful gown, matching nail polish, and somewhat large jewelry. She was bent forward in bed but was not uncomfortable.

After introducing myself, I asked her how she was doing and started my history and physical examination. As I examined her I realized she had a rock-hard right breast, with stretched skin that was warm and puckered where the lymphatics had presumably been invaded. The skin was so tight that I imagined it could break open any moment and pour forth the tumor that lurked within. She had large rock-hard lymph nodes in her axilla and in the supraclavicular region. She could not lift her right arm beyond 30 to 40 degrees. Her entire right arm and forearm were swollen. She said this had occurred only within the last 2 weeks.

She denied feeling any pain and felt well except for the shortness of breath that had brought her to the hospital. She wanted the pleurodesis because it would prevent the fluid from reforming, and she would not have to get admitted to the hospital again. After that she wanted to go home. That’s all she wanted.

Refusing Further Treatment

I pressed for reasons why she had stopped her treatment. Was she having unmanageable side effects? We could switch her to alternate drugs. Treatment options for breast cancer are numerous, I explained. Was the treatment not shrinking the tumor? We could change the regimen or send her for radiation or surgery, possibly followed by chemotherapy. Was it a long and difficult commute from home? We could arrange transportation. Did she understand her medical condition? I told her that she had triple-negative breast cancer, an aggressive form of cancer that without treatment could progress rapidly and take her life away.

“Yes, I know,” she said. “I thought about it several times, and I decided 3 months back I do not want any more treatment; the Lord wanted me to get 3 cycles and the Lord wanted me to stop.”

I said, “I realize this and am not trying to persuade you (even though I pretty much was), but I want to make sure that you understand the seriousness of your decision not to opt for any treatment. The choice is yours but I want you to carefully consider your options before deciding.”

“Yes,” she smiled, “I understand.”

So I decided to change tactics. Did she have a family?

“Yes,” and her face lit up in a wide smile, “4 children, all grown up; 3 grandchildren, of all different ages.” They would all come to visit her that evening. They knew about her decision. Her daughter had objected initially, but had finally reconciled herself to her mother’s decision.

“Can we do anything to make your treatment experience better?” I pressed one last time.

“Well,” she sighed, “it is not about the treatment or the doctors or even the cancer.” This was about her. She had decided that she did not want to fight this thing anymore. No external factors had influenced her decision. She had decided 3 months ago that she did not want any more treatment. She had a few things to take care of, which she already had. She was at peace and ready to move on.

The conversation lasted about an hour. Just like all the other members of the medical team taking care of her, I had attempted to understand my patient’s reasons for refusing treatment. We had all tried, to different extents, either by questioning her repeatedly to ascertain her level of understanding or by talking about her family’s wishes or by subtly expressing our disapproval, to somehow persuade her to get more treatment. We had all failed.

That day, I came out of the room feeling disheartened, as if I had not done my duty. I did not understand her reasons; I had not been able to think of anything I could say that would make her change her mind.

On Her Own Terms

Months later I saw her daughter, who was visiting the hospital. She told me that her mother had died, at home, with her family at the bedside—probably a peaceful, quick, silent death. They had a big family dinner the night before. She had cooked for everybody and had been the ever-gracious hostess; there was music, love, and laughter in the household. And when the family woke up the next day, she was no more. That was how she had wanted it. She had died just as she had lived her life: on her own terms. As I reflect back, I think about the day I saw her in the hospital. The sunlight streaming through the window of her 11th-floor room overlooking Center City Philadelphia, the certainty and determination written all over her face as she smiled at me, the tragic beauty of it all.

And I wondered: How long a discussion was long enough? When do we cross the thin line between attempting to understand our patients and imposing our opinion or conveying our disapproval of their decision? And when they do not agree with our opinions, how do we refrain from judging them for it? Or how do we leave the room not feeling annoyed and defeated? How do we, as physicians, not give up on our patients, even when they do not agree with what we think would be the right thing for them? How and when do I stop being a medical professional with firm, confident medical opinions, stop being a medical oncologist bent on eradicating disease at any cost, and become a fellow human being? Sometimes I wonder if it is then that we are closest to conquering cancer.