Few problems in oncology have easy fixes. This one does: Medical vernacular unwittingly distressing patients when a phrase means one thing to clinicians and something different to patients. The problem keeps growing in today's culture of healthcare as medicalese increasingly slips into conversations with patients and more patients read chart notes through online portals.
Understanding the negative impact of such miscommunications can guide our brainstorming for alternative language. To illustrate, I'm sharing the patient perspective on phrases commonly used in discussions about persistent or progressive cancer. Suggestions for alternative language provide a starting point for finding and adopting phrases that communicate the ideas equally well while honoring the dictum to do no harm.
Treatment Failures
At the young man's visit, his oncologist reviewed the latest scan results. I wish I had better news. The abnormalities are slightly larger. Since you failed treatment, let's talk about what's next. We have good treatment options for this situation. I have hope.
The patient's face flushed, which the oncologist attributed to distress about the news. The caring physician kept the focus on the hope of effective treatments, not realizing that the patient's reddened face reflected shock at hearing "you failed."
What? I didn't fail anything, thought the patient, feeling irritated and somewhat hurt. Indeed, he'd been an ideal patient, having completed every test, treatment, and doctor visit as instructed. He'd taken his medications at home exactly as prescribed. He'd reported side effects and problems in a timely manner. Failed?
The patient didn't dare say anything despite feeling wrongly judged. He wouldn't risk distracting his oncologist or, worse, causing offense. Feeling a need to bite his tongue worsened the sense of vulnerability heightened by the scan results.
Other patients in nearly identical scenarios described to me how after hearing You failed treatment, they also decided to keep mum about the resultant distress. Unlike the young man who rejected the verdict, though, this group of patients took the words to heart. Murmurs of self-doubt and self-blame thereafter rattled around in their head. I failed. I should have eaten healthier. I should have been more positive.
When clinicians chart their notes or discuss cases among themselves, typing or saying "the patient failed treatment" provides a succinct way to express an objective assessment that the disease persisted or progressed despite appropriate treatment. What clinicians mean-and what I trust they believe-is that the treatment failed, and they are not passing judgment about that patient's role in the unwanted outcome. (An exception might be if patients sabotaged their care by skipping treatments or, against medical advice, by pursuing counterproductive measures.)
Understandably, some patients hear judgment. In their world, "you failed" is a charged expression of condemnation. The sentence structure-you failed-puts blame squarely on patients and, even if only subliminally, burdens them with a sense of responsibility. While patient distress in real-time conversations may be offset by the subsequent explanations about their situation, online notes have no safety valve. Think about the potential impact of patients at home reading their chart. In an official document filled with medical jargon, patients are less likely to miss or brush off a black-and-white patient failed treatment-words they think they understand.
A more healing alternative is The treatment failed you. Flip-flopping the subject and object of the transitive verb shifts blame for the failure to the treatment. While better, any reference to failure still risks causing distress by triggering worry that Something caused my treatment to fail, right? Did my physician prescribe the wrong drugs? The wrong doses? Was the therapy administered incorrectly?
These stories of unintended emotional harm suggest that we need a phrase to perform two functions: communicate the fact of an inadequate disease response and put the kibosh on the idea that someone did something wrong. How about this? Since the disease did not respond as hoped, let's talk about what's next. This is something we knew could happen even if you and everyone else did everything right.
Salvage Therapies
My journalist friend, Mary, called me with upsetting news. Two years after successful treatment of Stage 2 Hodgkin's lymphoma, routine follow-up tests led to a biopsy. Mary described to me the doctor visit where she learned the results-It's Hodgkin's again-followed by the oncologist's discussion of salvage therapy.
Despite her professional training as an astute listener, she couldn't tell me whether the oncologist had proposed a stem cell transplant (which is what she ended up doing) or offered treatment options. What threw her off was hearing "salvage therapy." Is she talking about a last-ditch effort unlikely to work or that would only yield partial results? Like maybe we could only hope to salvage an arm or a leg! Making matters worse, "rescue therapy" was also used during that discussion, which Mary found equally upsetting. That sounded like a "Hail Mary" pass in football - not likely to work, but hey, might as well try.
Until then, Mary's knowledge of "salvage" had been in non-medical settings where it means to save from ruin. "Salvage" naturally conjures images where whatever is saved is never the same again. Cargo salvaged from a sunken ship. Furniture and picture albums salvaged from a fire or flood. Marriages salvaged after infidelity.
Mary told me she quickly figured out that "salvage therapy" basically just meant Plan B-the next thing to try after the standard first-line treatment didn't work. Her suggestion for alternative language works well. Because standard therapy did not give us the results we need, we will shift to Plan B. To minimize patients' perception of Plan B as inferior, it helps to normalize changing therapies as a routine path to improvement or, if applicable, cure. We prepare for this situation because some cancers respond better to second-line therapies. Unfortunately, that's something we can know only after trying first-line therapy.
Over the course of your career, you perpetually update your understanding of disease and recovery, and your use of diagnostics and therapeutics. Words and phrases used to discuss medical matters need updating from time to time, too. As quickly as possible, let's work together to relegate "the patient failed treatment" and "salvage therapy" to the bin of archaic language where "cancer victim" has been collecting dust. Words matter.
WENDY S. HARPHAM, MD, FACP, is an internist, cancer survivor, and author. Her books include Healing Hope-Through and Beyond Cancer, as well as Diagnosis Cancer, After Cancer, When a Parent Has Cancer, and Only 10 Seconds to Care: Help and Hope for Busy Clinicians. She lectures on "Healthy Survivorship" and "Healing Hope." As she notes on her website (http://wendyharpham.com) and her blog (http://wendyharpham.com/blog/), her mission is to help others through the synergy of science and caring.
Patient Handouts
Oncology Times offers helpful handouts on a wide-range of oncology topics, including: A Healthy Approach to Online Test Results, When Your Child Is Diagnosed With Cancer, and Coping With Treatment Delays. You can download all patient and clinician handouts at https://bit.ly/2FE9g6K.