Only a fraction of the cancer patients in the terminal stages of their illness fully understand their prognosis. The findings suggest many patients are “kept in the dark”, even though they only have a couple months to live anymore.
The study was made by researchers at the Memorial Sloan Kettering Cancer Center, Cornell University and Weill Cornell Medicine. One of the authors, Holly Prigerson, the Director of the Center for Research on End of Life Care at Weill Cornell Medical Center, said the results were a “shock” and highlight a grave communication problem between doctors and patients.
The doctors asked 178 cancer patients questions about their medical condition and future prognosis. For instance, they were asked “how long do you think you have to live?” or “did you have a recent life expectancy discussion with your doctor?” before and after receiving a medical scan that staged their illness.
Only five percent of the interviewed patients made statements that actually reflected the reality of their medical records before their illness was stage. As such, the rest were incapable of making a just and informed decision about their care.
“Many did not know that they were at the end-stage of their illness or that their cancer was incurable. They were basically making treatment decisions in the dark,” explained Prigerson.
The authors identified a number of roadblocks that hinder doctor-patient communication. On one hand, doctors themselves are incapable of delivering the bad news, hiding under a front of a medical jargon or even omitting the heart-shattering verdict all together to manage the patients’ hope. On the hand, patients themselves either don’t understand the prognosis or choose “not to hear” it.
“It takes a lot of conversations to find someone who can tell me – in full-colour, human, non-clinical terms – what it’s actually like to have to, on a daily basis, tell people that they’re seriously ill. Finding doctors to talk to isn’t the problem. Our conversations start promisingly enough. But somewhere along the line, everything comes through a professional filter. They become less clear, less direct, obscured in medical language, cloaked in the self-preserving bubble of the passive voice or generalised to just any doctor’s experience. “You can become upset by it but…,” wrote Chrissie Giles in an editorial for the BBC in 2015, showing this is a general problem that’s not confined to the study’s sample size or country, for that matter.
There is some good news, though. The authors of the study published in the Journal of Clinical Oncology found advanced cancer patients significantly improved their illness understanding after openly discussing life-expectancy with their oncologist.
“That information may also help patients prioritize how they wish to spend the last few months of their lives, some by fulfilling ‘bucket lists,” Prigerson said. “Treatment choices patients make might follow from these priorities.”
I can only begin to imagine what it must be like to learn you only have a couple of months to live, but if this is a medical reality no time should be spared to make this very clear to the patient. “Talking about these things at the current visit will have the greatest influence on patients,” Prigerson said.