Challenges & Choices is an ongoing series where we tackle the most difficult questions in cancer care. From finances to end-of-life care, we will explore how you can be prepared with practical information, ways to find emotional support, and stories from people who have been there.

IN A PREVIOUS ROLE as chief quality officer for the Yale Cancer Center in New Haven, Connecticut, oncologist Kerin Adelson was given the difficult responsibility of approving which patients would receive critical treatments for their cancer. Some of the most delicate decisions involved patients with very advanced cancers, who perhaps had just weeks left to live, and physicians who felt strongly they had a treatment option that could buy more time.

“Time and time again, they’d say, ‘Oh, but there’s this biomarker. If anyone will benefit, it will be this patient,’” Adelson recalls. “And over and over again, even when we approved really high-cost drugs that we were never going to get reimbursed for, it never worked.”

Now, Adelson says, she has the data to prove it. In a paper published May 2024 in JAMA Oncology, co-authored by Adelson, the research team studied more than 78,000 U.S. cancer patients and found “no statistically significant survival benefit” for those who received care at centers that were more likely to give systemic treatment for very advanced cancers, which the researchers defined as the last two weeks of life. That led the authors to recommend that oncologists more carefully consider discussions around ending active treatment of the cancer.

Adelson, now chief quality and value officer at the University of Texas MD Anderson Cancer Center in Houston, says the research adds to an existing body of knowledge pointing toward a lack of effectiveness in treating advanced cancers. In 2015, she notes, the American Society of Clinical Oncology and the National Quality Forum established a metric to measure the percent of cancer patients receiving chemotherapy in the last two weeks of life, with an underlying goal of shifting more such patients away from continuing treatment that causes toxic side effects even when it no longer controls cancer.

Despite this, some oncologists have yet to change their practices, she says. Gaps in the literature left open the possibility that newer systemic treatments like immunotherapy might work better or that prior studies had missed patients who received late-stage treatment and did survive longer.

Adelson says the new paper accounts for such possibilities by studying outcomes in a large cohort of patients diagnosed with breast, colorectal, pancreatic, renal cell, urothelial and non-small cell lung cancers, while including chemotherapy alongside other systemic treatments such as immunotherapies. Maureen Canavan, the study’s lead author and an epidemiologist at Yale School of Medicine in New Haven, Connecticut, says the study’s design also took measures to account for differences in patient and provider characteristics, such as hospitals with higher rates of treatment for late-stage cancers, in order to protect against skewed results. The outcome was the same.

“In none of the cancer types could we see a benefit for higher treatment rates. It calls for consideration for oncologists to really stop, pause and think, ‘Why am I doing this?’” Canavan says. She adds that more holistic thinking would include careful consideration of ending active treatment earlier and focusing on care that enhances patients’ quality of life.

For Patients, Knowledge and Planning Are Key

While Adelson and Canavan say the takeaway of the study is primarily directed at oncologists, they add that cancer patients and their families can also benefit from the findings. Some patients and families may want to pursue active treatment options, they acknowledge. But physicians can sometimes be reluctant to bring up ending treatment, perhaps not wanting to take away hope, even when they know patients are showing signs of end-stage cancer.

“I think that patients should be comfortable asking their doctors the hard questions,” Adelson says. “What is my prognosis? What does more treatment mean to me? How likely is it to work? What will it mean for my quality of life? I think too often we dance around those topics.”

Kristin Levoy, a researcher at the Indiana University School of Nursing in Indianapolis, agrees. Levoy spent more than a decade as a nurse in clinical oncology and says she was often approached by family members who felt blindsided by having to make treatment decisions in the later stages of a loved one’s illness.

“They described regret around the decision-making they had to make on behalf of their loved one and felt really ill-prepared,” Levoy says.

Those experiences prompted Levoy to transition to a career in research, with a focus on advance care planning for terminal cancer patients. In a 2023 review of existing research in the Journal of Pain and Symptom Management, Levoy and colleagues found that cancer patients with advance directives were 28% less likely to receive chemotherapy in end-of-life scenarios than those who did not, were 31% more likely to use hospice, and were 51% more likely to implement do-not-resuscitate orders.

She says the work of Adelson and Canavan dovetails with her own experiences and research. Patients can benefit from understanding that systemic treatments in very advanced stages of cancer are unlikely to be successful, Levoy says. They can act on that information by establishing advance care directives soon after the diagnosis of a serious cancer, revisiting those plans regularly as treatment progresses and choosing a caregiver they trust to carry out their wishes should they lose decision-making capacity.

Kyle Bagenstose is a Philadelphia-based reporter specializing in health and environmental topics.