Advanced cancer often brings preparation for the worst and proponents of the modern health care system use terms like "advocate" and "empowered" when everyone who isn't part of the system knows patients have trouble doing the former and certainly are not the latter.

Government, health insurers, and hospitals make the real decisions, and even if that goes your way doctors may do what they want. That is why nearly 40% say their wishes are ignored when it comes to their care goals.

Some patients want to pursue more aggressive treatment to extend life while others prioritize comfort and quality of life. That doesn't mean they will get either of those if anyone above them in the food chain disagrees. 

Nearly 37% of patients with advanced cancer felt that their actual care was in line with their wishes. That is markedly higher than advanced heart failure or chronic obstructive pulmonary disease patients, where only 19% of patients reported a mismatch between treatment and their stated desires.


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Those numbers come from 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. 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. Of the 1,100 patients, 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.

Around 25% preferred treatment aimed at extending life while around 49% preferred care focused on comfort and symptom relief, yet 51% of patients with advanced cancer got treatment to extend life whether they wanted it or not, compared to 35% of patients with other serious illnesses. Only 19% of patients with advanced cancer felt their care focused on comfort, compared to 28% of patients with other illnesses.

These are patient perceptions so only EXPLORATORY but tellingly there was no significant difference in two-year survival between patients who reported receiving life-extending treatment(24%) and those who reported receiving comfort-focused care (15% mortality). 

“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.”