A recent study has found that many patients with advanced cancer feel their treatment does not match their personal care goals. The research, led by a team at UCLA and published in the journal Cancer, surveyed over 1,100 patients with serious illnesses, including advanced cancer, heart failure, COPD, end stage renal disease, and liver disease.
The study showed that 37% of patients with advanced cancer who preferred comfort-focused care believed their actual treatment aimed more at prolonging life. In comparison, only 19% of patients with other serious illnesses reported this mismatch. The findings suggest that patients with advanced cancer are nearly twice as likely to experience a disconnect between their care preferences and the treatment they receive compared to those with other conditions.
“Some level of disconnect between patients’ goals and the care they receive is understandable given the complexity of serious illness,” said Dr. Areeba Jawed Shah, clinical instructor in the division of hematology/oncology at the David Geffen School of Medicine at UCLA and first author of the study. “But what stood out was that patients with advanced cancer—despite having similar illness severity and mortality risk as those with other serious conditions—were nearly twice as likely to report that their care did not reflect their personal goals. That level of discordance is both surprising and concerning. We can do better.”
Previous studies have not directly compared patient preferences for longevity or comfort with what they believe their treatment targets. This research used baseline survey data from a multi-site clinical trial on advance care planning for people facing serious illnesses.
Among those surveyed, about one-quarter in both groups preferred life-extending treatments while roughly half wanted comfort-oriented care focused on symptom relief. However, 51% of advanced cancer patients said their actual care prioritized extending life versus 35% among those with other illnesses; only 19% felt it focused on comfort compared to 28% in the non-cancer group.
“Even though this study is based on patient perception, it’s still deeply problematic that patients feel like they are receiving care that doesn’t align with what they want,” Shah said. “That’s a sign we need to improve communication and shared decision-making.”
The researchers also noted there was no significant difference in two-year survival rates between those reporting life-extending versus comfort-focused treatment (24% vs. 15% mortality). They suggested younger age and better baseline health among cancer patients may lead to more aggressive treatments even when these do not align with patient wishes.
“There are likely several reasons for the discordance,” said Dr. Anne Moyer Krouse, professor of medicine at UCLA and senior author of the study. “Advancements in cancer-directed treatments can often offer both longevity and quality of life, even in patients with advanced cancer. However, sometimes there are trade-offs, and high-quality communication is required to ensure that these complex, nuanced decisions are communicated with the patient and that decision-making is centered on patients’ goals and values.”
The authors recommend oncology teams engage earlier and more frequently in conversations about prognosis and patient preferences throughout treatment.
“Patients should always feel empowered to speak up,” said Shah. “If they feel their care isn’t aligned with their goals, we want to know. As physicians, we always want to adjust treatment to meet our patients where they are. These crucial conversations can change the course of care and optimize patients’ quality of life.”
Other contributors include Neil Wenger, John Glaspy, Ron Hays, Chi-Hong Tseng (all from UCLA), Rebecca Sudore (University of California San Francisco), Maryam Rahimi and Lisa Gibbs (University of California Irvine).
