April 11, 2021 (From Exit International) The Coöperatie Laatste Wil (CLW), together with thirty Dutch…
By Barbara Coombs Lee, February 11, 2019
When Blake Nordstrom, one of the fourth-generation of his family to lead the Nordstrom department store chain, died in January at age 58, the extended family of Nordstrom customers and associates were not only saddened, but profoundly shocked. This was because less than a month before, when he announced he had lymphoma, Nordstrom added the heartening news that his doctors considered the cancer “treatable.” He expected to continue working through his treatment.
I was especially attuned to the word “treatable” in this story because I had just read a most revealing study; one that should serve as a red alert for anyone with a cancer diagnosis.
Researchers at Stanford University in California and Children’s Hospital of Minnesota set out to discover whether doctors and non-physicians attached different meanings to the word “treatable.” As an ER and ICU nurse and physician assistant for 25 years, I have long known that what doctors intend to communicate during a conversation and what patients take away often differ wildly. But this study’s revelations stunned even me.
The study, published in the December 2018 issue of the journal Critical Care Medicine, consisted of carefully designed interviews of 24 non-physicians and 24 physicians, using a typical medical scenario. It found that the physicians and non-physicians understood two very different meaning for the word “treatable.”
Researchers found that non-physicians hear “treatable” as a positive message about the patient’s future. They hear that the disease can be cured, or at least contained, so it does not seriously diminish the quality of life. If the doctor also shares dire news about the overall prognosis, non-physicians discount it and come away with only the “good news” of treatment.
But the study revealed that doctors mean something quite different by the term “treatable.” Doctors say “treatable” when they don’t want to say “incurable.” When doctors use the word “treatable” they simply mean “there is a treatment that can be applied.” Doctors do not mean to imply the treatment is likely to succeed, or that if it does succeed the disease will go away. They don’t even mean the treatment is likely to prolong life. The chance this treatment could prolong life might be infinitesimally small, and the doctor will still use the word “treatable.”
The researchers concluded: “Physician use of the word ‘treatable’ may lead patients or surrogates to derive unwarranted good news and false encouragement to pursue treatment, even when physicians have explicitly stated information to the contrary.”
This very unfortunate confusion over the word “treatable” is avoidable. My own experience and numerous studies suggest most patients and their loved ones prefer candor from their doctors over vague terms that lead to false hope. People would like to make plans and treatment decisions knowing the realistic benefits, burdens and full risks of any course of treatment.
Doctors will likely continue to use the term “treatable,” which means patients and their families will have to be proactive to understand what they are really being told. Below are 10 suggested questions to ask whenever a physician proposes any course of treatment. But they may be especially important if the physician has labeled a disease “treatable.”
- What is the goal of treatment, i.e., the expected outcome or response?
- How often does the treatment work for people in my situation?
- If the goal is to prolong life, what is the anticipated increase in life expectancy? How many months or years?
- What are the risks or side effects? How often do these occur?
- How will this treatment affect my quality of life?
- What is the frequency, duration and recovery time after each treatment?
- Is there a chance this treatment will make my condition worse?
- What are other treatment options?
- Are there additional options beyond those you have mentioned?
- What will be likely to happen if I decline this treatment, or any treatment?
What is the life expectancy without this treatment?
My advice: Be curious, ask for candor, apply tools of discernment. Your quality of life during the precious final weeks or months may depend on it.
Barbara Coombs Lee is the author of the new book “Finish Strong: Putting Your Priorities First at Life’s End,” which gives health care consumers the tools to understand and navigate today’s medical system. She is president of Compassion & Choices, the nation’s oldest and largest organization working to empower everyone to chart their end-of-life journey.
Batten, Jason N.; Kruse, Katherine E.; Kraft, Stephanie A.; Fishbeyn, Bela; Magnus, David C. Less
Critical Care Medicine. 47(3):369-376, March 2019.