Grating Phrases and Jargon That Confuse (and Sometimes Demoralize) Patients
I was a caregiver for a year to a spouse with advanced bladder cancer. In the six years since his death, I have worked as a bladder cancer patient advocate.
My patient advocate roles have varied but have included: moderating a caregiver support group; participating as an advisor to a Patient-Centered Outcomes Research Institute (PCORI) bladder cancer research grant; reviewing bladder cancer federal research proposals to provide a patient/caregiver perspective; and attending a range of bladder cancer-specific conferences and meetings. As a result, I’ve talked to a lot of bladder cancer patients, caregivers, doctors, and researchers over the years.
Certain phrases are not helpful or clear to patients
Something I’ve noticed is that certain phrases and words routinely used by doctors and researchers are – at best – confusing and – at worst – demoralizing. Following is my breakdown and reasoning related to a few of those.
Patient don't "fail" treatments; treatments fail patients
“The patient failed BCG,” is a common phrasing that doctors use to describe a treatment outcome. The patient didn’t “fail” anything. The patient took the drug that you, the doctor, recommended. And the drug failed to work for the patient.
I’m not sure where this phrasing originated. It is awkward and almost seems like a way to shield the medical system and doctors from the reality that treatments sometimes do not work.
We shouldn't place the burden of "failure" on patients
Here’s my question: do we really want to pile the concept of “failure” onto to someone who already has bladder cancer and for whom treatment did not work? Doesn’t that likely make the person feel worse, to be described as having “failed”? I have even heard patients say that they “failed” a given treatment. That makes me both sad and angry.
I can’t think of another realm of life in which we speak this way. If a car malfunctions, we don’t say the driver failed. We say that the car failed to work correctly.
To tell a patient, "test results were positive," can be confusing
The word “positive” has become such a popular word in our lexicon in recent years and one with positive connotations. But a “positive” lab result may not be good news. Testing positive for the flu or coronavirus may offer an explanation, but it’s most likely not positive news.
Receiving a positive test result for any cancer is most definitely not good news. While you might think that everyone understands this, I have met patients who were confused by it. And I can understand why, especially if they haven’t previously had much experience with the medical system.
What exactly is salvaged in a salvage cystectomy?
This term is used more among doctors than with patients, and I don’t get the sense it is used as much as perhaps it was in the past. But it still bothers me.
A “salvage cystectomy” is essentially a last-ditch effort to save the patient’s life after radiation therapy hasn’t worked or a partial cystectomy hasn’t worked. It is the patient, in this case, who is being “salvaged.”
It is just a distressing and harsh description. I think of a salvage title on a car. Those are the used cars you are supposed to avoid as a buyer.
I think about other surgeries that are lifesaving: I’ve never heard of a salvage appendectomy or a salvage heart bypass. Why is this particular phrasing used for bladder cancer patients?
What does it mean when a doctor recommends "medical management"?
As a participant in research, I’ve heard doctors talk about “medical management.” What they mean by that is managing a condition with medicines, such as BCG, as opposed to surgical management, such as a radical cystectomy.
But as a regular person, “medical management” sounds like any treatment that may be offered by the medical system. Discussing “medical management” with a patient may be confusing to the patient if the term is not clearly defined during the conversation.
Words are small, but they can have a big impact
Choice of words matters. While certain words and phrasing might make perfect sense to doctors who are used to their frequent use, they can be confusing and even demoralizing to patients.
What topics are you most interested in learning about? (Choose up to 3)