When We Can’t Cure, We Can Alleviate Fear and Suffering

When We Can’t Cure, We Can Alleviate Fear and Suffering

Don S. Dizon, MD, FACP, FASCO

@drdonsdizon
Dec 20, 2018

She had avoided doctors all of her life; never felt she needed them. She had been independent, too—lived alone for all of her adulthood in the small town in northern Massachusetts she was born in, self-sufficient, working full time and caring for a home she had paid off. Independent, but not isolated—she had family around and they supported her fully.

She had presented due to vaginal bleeding. Although she had avoided the medical establishment, she knew enough that at the age of 62, this should not be happening. She presented to an urgent care clinic and the evaluation would forever alter her life. The bleeding led to an ultrasound which showed a large mass in her uterus. She was transferred to my hospital for further work-up which ultimately led to a biopsy and full imaging. It turned out she had cancer of the uterus, and it was literally everywhere: her liver, her spine, and her lungs. One of her spine lesions was on the verge of compressing her spinal cord. It turned out she had some signs before the bleeding—weakness in her right leg, difficulty going to the bathroom to urinate—though she had not thought anything of it when they started a few weeks earlier. She underwent urgent surgery to stabilize her spine, and then she was sent to rehabilitation.

I had met her as an outpatient. She arrived by wheelchair, debilitated by her weeks-long hospitalization. She had hoped to be home soon but realized that she was still too weak. Together we reviewed the data: she had a very aggressive form of uterine cancer, stage IV. “This means I cannot cure you, and the best we can hope for is disease control,” I said.

She cried, realizing her cancer was quite advanced. She wasn’t prepared for the news, but she was also not afraid to die. She was most afraid of suffering: of a life of symptoms from chemotherapy and from the disease. The thought of a painful death terrified her.

“What can we do?” she asked.

“From what we know about your cancer, we can see if some radiation will help: stabilize some spots in your spine, prevent you from developing complications and, hopefully, prevent any pain.” I stopped then, wondering if I should discuss chemotherapy. I had just told her we could not cure her cancer and she had told me how afraid she was of side effects. I worried if the weeks or months I would give her would be spent sicker than she was right now.

“Chemotherapy is an option; we could even do anti-estrogen treatment.” The hope would be to stabilize things, even if I couldn’t take the disease away. With that, I discussed both options, going through each agent, how it’s given, it’s side effects, and how we would know if it was working.

As we talked her eyes grew wider, not from wonder, but from disbelief that she was even having this discussion. I stopped then. “Perhaps you should come back next week when you’ve had a chance to absorb our discussion so far. It’s a lot.”

She looked me in the eyes then. “I just cannot believe this is happening. Everything in me says ‘don’t take chemotherapy.’ What do you think we should do?”

With that, I reassessed what we talked about, who she was, and what our options were. Like her, I had doubts about what the right thing to do was. “Have you heard of palliative care?” I asked. She shook her head, so I continued. “Palliative care doctors are partners to folks like me who take care of patients with cancer. They help me make sure that care is complete: I will always be your oncologist and together we will decide on how to treat your cancer and what our next steps will be. My friends in palliative care will work with me to ensure we are doing everything we can to address other aspects of cancer: the physical symptoms like pain and the others that I don’t do a great job with, like the anxiety, fear, spiritual, and emotional aspects of living with this disease.

“And as things might progress and get worse, their role might even become more important to you than my own.”

She listened intently and (dare I say) she felt reassured. We made arrangements for her to see my colleague in palliative care within the week.

“But what about the cancer?”

“For now, let’s focus on getting you plugged in to palliative care. Anything I can do will have risks, and at the end of the day, this cancer won’t be gone. I ‘d recommend we defer the decision and concentrate on the here and now.”

“That sounds good,” she said. After meeting with palliative care, she told me she didn’t want treatment. While a part of me wanted her to reconsider (after all, I wanted her to at least try), another side of me felt she was making the right decision. We opted to keep the door open for if she changed her mind.

A few weeks passed when my nurse handed me a piece of paper; it was my patient’s obituary. She left the rehabilitation center and went home, where she died. She was surrounded by her family and friends, pets on her bed. She had died on her own terms, in her own home.

At that moment, I knew we had helped her the best way we could. And I smiled.

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Comments

Diane M. Dragaud, MA

Jan, 22 2019 4:39 PM

Dear Don, thank you for sharing this story. It is so beutifully and caringly written.


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