When I was first diagnosed with lymphoma thirty years ago, I listened to my doctors and nurses and didn’t offer much opinion. I did just about everything my doctors and nurses told me and I didn’t say much. But that didn’t last long. By the time I was at Moores Cancer Center at San Diego Health, I was me again. I realized that the doctors and nurses actually want to hear from their patients. At least to a certain extent.
I have immense respect and appreciation for my team of physicians and nurses, but I am in my fourth battle now, and I have learned a lot and I always have a lot to say. Among the things I know now that I did not know before is that it’s ok to share your opinion about your treatment choices. It’s actually a must.
My team respects me, and I respect them. And they know I am just trying to be a real partner in this battle. I am always respectful. But I do at times challenge my terrific docs. UCSD is a place where doctors and nurses really do respect the patients and treat them in a respectful way. They know that I have read up on the treatments I have done and the ones I may do in the future.
I am far more verbal these days because I know so much more now. This is a rather new concept to make the patient a part of the team. It works. As long as there is mutual respect. I am now fighting stage 4 cancer and I have learned a lot. Cancer treatments are far more complicated now. I have read multiple books about my cancers and written countless stories about them. I keep up and I have shared this info I have compiled with my team. But the patient-physician dynamic can get complicated, no matter where you are being treated.
At UCLA, another state of the art cancer facility, patients faced with advanced cancers such as the one I have must make deeply personal decisions about their care plan. Some may pursue more aggressive treatment with the primary aim of extending life, while others may wish to prioritize comfort and quality of life.
But according to a new study led by researchers at the UCLA Health Jonsson Comprehensive Cancer Center and the UCLA Palliative Care Research Center, many people with advanced cancer report that their treatment does not align with their personal care goals.
The findings, published in the journal Cancer, reveal that 37% of patients with advanced cancer who preferred treatment that prioritizes relieving symptoms and maintaining comfort felt that their actual care was instead focused more on prolonging life.
In contrast, only 19% of patients with other serious illnesses such as advanced heart failure or chronic obstructive pulmonary disease (COPD) reported this kind of mismatch, suggesting their treatment was more likely to align with their personal goals.
“Some level of disconnect between patients’ goals and the care they receive is understandable given the complexity of serious illness,” said Dr. Manan 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.”
While it is widely accepted that care should reflect what matters most to patients, no prior studies have directly compared what patients want, whether it be longevity or comfort, with what they believe their treatment is aiming for.
To better understand whether patients with advanced cancer receive care aligned with their treatment goals, the research team conducted a post-hoc cross-sectional analysis using baseline survey data from a multi-site clinical trial focused on advance care planning for patients with serious illnesses, including advanced cancer. The survey collected information on patients’ health status, care preferences, and treatment experiences, comparing responses from patients with advanced cancer to those from patients with other serious illnesses.
Among the 1,100 patients who completed the survey, 231 patients had advanced cancer, 163 had advanced heart failure, 109 had advanced COPD, 213 had end stage renal disease, 72 had end stage liver disease and 311 had advanced age and one of the serious illnesses.
The researchers found patients with advanced cancer and those with other serious illnesses had similar care preferences, with about 25% in both groups preferring treatment aimed at extending life, while around 49% preferred care focused on comfort and symptom relief. However, 51% of patients with advanced cancer were more likely to report that their actual care focused on extending life, compared to 35% of patients with other serious illnesses.
Meanwhile, only 19% of patients with advanced cancer felt their care focused on comfort, compared to 28% of patients with other illnesses.
“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 team also found no significant difference in two-year survival between patients who reported receiving life-extending treatment and those who reported receiving comfort-focused care (24% vs. 15% mortality). The authors also noted that younger age and better baseline health among cancer patients may lead to more aggressive treatment approaches, even when not aligned with patients’ stated preferences.
“There are likely several reasons for the discordance,” said Dr. Anne Walling, 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. But 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 researchers call on oncology teams to engage patients in deeper discussions early in the course of treatment, assess and cultivate prognostic awareness in an ongoing fashion, and ensure that patient preferences and goals are at the center of decision-making.
“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 study authors include Neil Wenger, John Glaspy, Ron Hays, and Chi-Hong Tseng of UCLA; Rebecca Sudore of the University of California, San Francisco; and Maryam Rahimi and Lisa Gibbs of the University of California, Irvine.
