Cancer patients do not always seek a cure if the price could be months of misery from toxic treatment.
Two years ago, my mother-in-law, Jan, went to a doctor complaining of gastric distress and was soon diagnosed with pancreatic cancer. Surgery was not possible because of the tumor’s location. An oncologist proposed chemotherapy to add a few months to her life. “Can you guarantee it?” she asked. He could not. So she passed. She was 84, and otherwise in good health. My wife and I thought she was foolish to turn down a chance to live longer.
But cancer patients do not always seek a cure, or even extra time, if the price could be months of misery from toxic treatment. Patients may not realize they have the right to turn down or halt treatment. Doctors may be comfortable talking about cure but not end-of-life care. Denial can keep both patient and doctor from having an open discussion about what to do when the prognosis is grim.
Some doctors believe in “necessary collusion”—the title of an article in a 2005 issue of Journal of Clinical Oncology. The doctor should not tell the unvarnished truth from the get-go, argues oncologist Paul Helft, MD, the article’s author and faculty member of the Indiana University Center for Bioethics, if it would destroy a patient’s ability to hope. Others disagree: “I believe it is best to be honest,” says Charles Loprinzi, MD. A patient facing dire circumstances will “figure it out eventually.”
Then again, doctors do not always know what will happen. One thing is certain: Patients need to tell their doctors if they want to know the outlook. And doctors need to do a better job preparing patients with advanced disease. Cameron Muir, MD, says a patient with a serious cancer diagnosis should be introduced to the idea of palliative care—managing pain and other problems but not pursuing a cure. “We talk about hope for the best, plan for the worst,” he says. “If you don’t allow people to plan for the worst, they’re more shocked and less prepared” if things don’t go well.
As for my mother-in-law, to the astonishment of her doctors, her symptoms abated after diagnosis. A year went by, and she led her life and enjoyed it immensely. Then she began feeling poorly again. She was hospitalized in June 2005; no treatment could extend her life. “Did I do the right thing by not having chemotherapy?” she asked the doctor assigned to her case. “You had a wonderful year,” he told her. And that was true. In his mind (and in hers) there was no doubt: She made the right decision.