Chemotherapy, a frontline treatment for many forms of cancer, uses chemical agents to stop fast-growing cells from multiplying. That includes cancer cells, but also other fast-growing cells, which is why it has so many side effects. The chemicals do not discriminate between what’s cancer and what isn’t. Although chemotherapy sometimes can halt the progress of cancer, sometimes it can only slow it.
Sometimes cancer patients don’t understand the difference. Sometimes it’s because they don’t want to-they are in denial-and sometimes it’s because their doctors don’t communicate well. In the case of a terminal disease, this is very difficult conversational terrain, but it’s part of the job of a caregiver.
A recent story by Jane Brody in the New York Times put a fine point on this unpleasant situation.
She told the story of a woman dying of cancer whose oncologist considered delivering chemotherapy directly to her brain despite its significant risks and the fact that he knew it couldn’t help her. His explanation of what purpose a futile therapy would serve was, according to Brody, “I don’t want Judy to think I’m abandoning her.”
Dr. Diane E. Meier, an expert on palliative care, analyzed his approach. “To avoid feeling that they’ve abandoned their patients, doctors throw procedures at them,” she told The Times.
The instinct is compassionate, but it doesn’t, ultimately, help the patient. As Meier said, a better approach is to “restore the patient to the center of the enterprise.” Not only is it the right thing to do to help patients and their loved ones plan and prepare for the likely outcome of their illness, but it helps to stem the tide of overtreating and overspending on health care.
Dr. Marty Makary, author of “Unaccountable: What Hospitals Won’t Tell You and How Transparency Can Revolutionize Health Care,” pointed out that doctors also might be encouraged to prescribe chemotherapy because they get a commission.
A study recently published in the New England Journal of Medicine showed that many patients with incurable cancer don’t understand that chemotherapy does not cure the disease, that it’s only a palliative treatment; that is, one that relieves a problem, but doesn’t solve it.
The study, “Patients’ Expectations about Effects of Chemotherapy for Advanced Cancer,” involved nearly 1,200 patients with incurable lung or colon cancer. All were receiving chemotherapy. Seven in 10 of the lung cancer patients and 8 in 10 of the colon cancer patients didn’t understand that chemotherapy was unlikely to cure their cancer.
They were asked how well their doctors communicated with them. The chances of misunderstanding were twice as high among patients who rated their communication with their physician less favorably than it was among those who rated it favorably. The researchers concluded that “Many patients receiving chemotherapy for incurable cancers may not understand that chemotherapy is unlikely to be curative, which could compromise their ability to make informed treatment decisions that are consonant with their preferences. Physicians may be able to improve patients’ understanding, but this may come at the cost of patients’ satisfaction with them.”
As Brody explained in The Times, doctors who care for people with an incurable or terminal illness often suffer as well. If your job is to heal, or at least make someone feel better, and you can’t, it’s only natural for anyone with a shred of humanity to feel like a failure, to feel frustrated and helpless. And sometimes, to grasp at straws; to mislead patients.
Some doctors might respond by visiting their patients less often, they might not return phone calls. It might not be intentional, but the patients, understandably, feel rejected in their greatest time of need. Brody says that “can exacerbate illness and pain and even hasten death.”
Ultimately, the oncologist who wanted to give his terminal patient a course of chemo to her brain realized that what she needed most at the end of her life was not more chemo, as Brody wrote, “but for him to sit down with her, to promise to do his best to keep her comfortable and to be there for the rest of her days.”
If you or a loved one is unlucky enough to be stricken with a chronic or terminal illness, make it clear to all of your medical providers what would help you most. For help organizing your thoughts, wishes and to formulate a strategy, see my newsletter “When a Conversation Can Save a Life,” and blog post, “Planning for the End: An Essential Piece of Quality Health Care.”