A cancer diagnosis is a life-altering event, and the news—let alone making decisions about how to manage treatment—is already challenging enough. But with a terminal diagnosis, those choices become even more fraught. At some point, say ethicists, doctors and patient advocates, enough is enough. Meaning the potential for benefit has to be weighed against the quality of what life is likely to be left. But where is that line? And how does each patient find it?
A study published in JAMA Oncology highlights just how agonizing those choices can get. Holly Prigerson, director of the Center for Research on End of Life Care at Weill Cornell Medical College and her colleagues studied the use of chemotherapy among a group of 312 terminal cancer patients. All had been given no more than six months by their doctors, and had failed at least one if not multiple rounds of chemotherapy, seeing their tumors spread to other parts of their body. About half were on chemotherapy, regardless of its ineffectiveness, at the time of the study.
Read more No More Chemo: Doctors Say It’s Not So Far-Fetched
Despite the intuitive sense that any treatment is better than none, there is not much evidence that chemotherapy is the right choice in these cases—and it may very well be the wrong one. Prigerson’s analysis showed that these patients experience a drop in their quality of life if they get chemo, and that they are therefore worse off than if they hadn’t opted for the treatment. On measures of things like whether they could continue to walk on their own and take care of themselves and keep up with their daily activities, those on chemotherapy reported marked declines compared to patients who opted not to receive more chemo.
“The results were counterintuitive to some extent,” says Prigerson. “The finding that the quality of life was impaired with receipt of the toxic chemotherapy was not surprising. The surprising part was that people who were feeling the best at the start of the therapy ended up feeling the worst. They are the ones most harmed and who had the most to lose.”
In other words, the chemo made the patients feel worse without providing any significant benefit for their cancer.
Previous studies have showed that chemotherapy in terminal patients is essentially ineffective; among those with non-small cell lung cancer, for example, third rounds of chemo were associated with a 2% response rate in tumor shrinkage, while fourth rounds showed 0% response. And whatever tumor shrinkage occurred wasn’t linked to a longer life.
Read more How Fish Oil Makes Chemo Less Effective
Groups like the American Society of Clinical Oncologists (ASCO) recently advised doctors to be more judicious with their chemotherapy use in terminal patients. The group’s guidelines recommend limiting it to relatively healthy patients who can withstand the toxic treatment and potentially overcome side effects.
The decision about how long to continue care, including chemotherapy, is up to each cancer patient, but Prigerson hopes that her results help to better inform those choices in coming years. Recent studies showed, for example, that despite explanations from their doctors, many cancer patients still believe that more rounds of chemo will provide some benefit to them, and are therefore—and understandably—reluctant to stop receiving therapy. But at some point, the data shows, more treatment is not better.
That may be especially true of patients with end-stage cancer who are still relatively healthy and not feeling sick. For them, additional chemotherapy will likely make them weaker, not to mention eat up more of the precious time they have left traveling to and from infusion centers. Prigerson plans to continue the study to better understand the dynamics of how decisions about treatments are made toward the end of life, but in the meantime hopes the latest findings at least convince doctors to reconsider how they advise their terminal patients about end-stage chemotherapy.
Read next: Why Breast-Cancer Survivors Gain More Weight
Download TIME’s mobile app for iOS to have your world explained wherever you go
More Must-Reads from TIME
- Donald Trump Is TIME's 2024 Person of the Year
- Why We Chose Trump as Person of the Year
- Is Intermittent Fasting Good or Bad for You?
- The 100 Must-Read Books of 2024
- The 20 Best Christmas TV Episodes
- Column: If Optimism Feels Ridiculous Now, Try Hope
- The Future of Climate Action Is Trade Policy
- Merle Bombardieri Is Helping People Make the Baby Decision
Contact us at letters@time.com