The woman came into the office, looking totally out of place amid the frail geriatric patients at my palliative care clinic. Elegant, slender, with a gorgeous head of curly blond hair, she was nothing like what I expected when she had called a couple of weeks earlier, asking for a consultation.
Her cancer story, too, was atypical.
The woman, a 50-something practicing clinical psychologist, had been diagnosed with stage 4 non-small-cell lung cancer six years earlier. By the time her tumor was removed surgically, the disease had spread outside the lung, so the patient received chemotherapy and radiation treatments. With each recurrence or progression of disease, the patient’s oncologist thought of a new approach, and each one worked. The patient maintained her busy practice and travel. She hoped she might turn this cancer into a chronic disease instead of a death sentence.
Given how well she appeared to be doing, I wondered why she was in my office.
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What was going on?
Over the years she realized that her oncologist was unwilling – in her view, unable – to talk to her about the “what-ifs?” of her cancer. What if this next treatment doesn’t work? What if my disease progresses and I can no longer function the way I want to? How will my family take care of me? Where and how will I die?
Seeking honest answers
The uncertainty and the unknown were consuming her.
Her oncologist’s reaction to each setback was to redouble his efforts. The patient’s “what-ifs?” were met with: “We don’t have to worry about that.”
The patient reasoned that her oncologist was unable to face the possibility – indeed, the probability – that she would die of this disease. She came to me for straight answers.
We talked about possibilities. Given the unusual course of her cancer, I admitted the real possibility that her oncologist could continue to find ways to keep it at bay. I explained that I could become a part of her treatment team to focus on her quality of life, provide the straight answers and help her plan for the worst while hoping for the best.
She said she was worried that her oncologist would feel upset that we had met and that he might not be comfortable teaming up with me on her care. I offered to call him, and to my relief, he agreed to work with me.
For the next 18 months, her oncologist and I remained in contact. When the patient learned, several months after we met, that her disease had progressed, the oncologist tried another experimental treatment; the patient responded well.
For another year, things remained stable, until the patient began to feel increasingly tired and started to have difficulty focusing her attention and memory.
Several months after that, brain imaging showed an enlarging mass that was progressing despite our efforts.
The patient came to see me. Her oncologist was recommending a treatment that involves placing a reservoir inside the brain to administer chemotherapy directly into the site where the tumor mass sits, in the hope of shrinking it. She wanted my opinion.
I called the oncologist: “What are you hoping we can accomplish with this treatment?”
After a brief pause, he confessed what I suspected: that it wouldn’t help her. I struggled for a response.
“Would you want me to encourage her to go ahead with it anyway?” I asked.
After another long pause, he told me that he didn’t want her to think he was abandoning her.
Little training for doctors
His comment struck me. For years I had tried to understand why so many of my colleagues persisted in ordering tests, procedures and treatments that seemed to provide no benefit to patients and even risked harming them. I didn’t buy the popular and cynical explanation: Physicians do this for the money.
It fails to acknowledge the care and commitment that these same physicians demonstrate toward their patients. Besides, the oncologist would make no money from the neurosurgery required for the procedure.
Patients and families often assume their doctors are knowledgeable about end of life, and they assume that if the doctor recommends more tests and treatments, he or she thinks they will help. Patients and families also assume that doctors will tell them when time is running out, what to expect and how best to navigate these frightening waters.
But many doctors don’t do these things. Most, in fact, have no training in this.
Physicians are trained to make diagnoses and to treat disease. So they order more tests, more treatments, even when these things no longer help or make sense.
To change behavior, we must change the education and training of young physicians. New doctors should learn about the management of symptoms such as pain, shortness of breath, fatigue and depression, with intensive training on doctor-patient communication: how to relay bad news, how to stand with patients until death and how to help them make the best use of their remaining time together.
‘She wants to say goodbye’
As we talked, my patient’s oncologist had a change of mind. He told the patient that he didn’t think intrathecal chemotherapy would help her and that he thought it was time to involve hospice. The patient gave up working, entered a hospice program and settled in at home, where everyone took care of her.
Toward the end of her life, the patient told me she wanted to thank her oncologist and say goodbye. Once she began receiving home hospice care, he had neither called nor visited. I called him and told him she’d love to see him.
But there isn’t anything I can do for her now, he told me.
“She feels very attached and grateful to you,” I said. “She wants to thank you, and she wants to say goodbye.”
He had not visited a patient at home before, but he agreed to go. She thanked him for his amazing care and for giving her so many good years after her lung cancer was diagnosed. After that visit, she lived only a few more days.
Meier is the director of the Center to Advance Palliative Care and a professor in the Department of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai in New York.