As I’m writing my last blog for ASH 2021, I am inspired to write about the topics that stoked my fire. You know, the ones that were a gut check, the ones that I couldn’t stop thinking about, the ones that I felt deep down in my soul —topics that I feel are ones to provoke deep thought and subsequent action. This is not to say that the scientific research, new data, amazing advancements, and hard work that the 879 myeloma-related abstracts aren’t of utmost importance —they are, and they will continue to guide the future of research in myeloma for years to come.
As an oncology nurse, my focus always seems to home in on the patient’s quality of life. The pure definition of quality of life is the standard of health, comfort, and happiness experienced by an individual or group. To fully understand how oncology care affects a patient’s quality of life, as providers, we must put ourselves in their shoes. What would matter to us? What would be a game-changer and what would be non-negotiable for us? What would be acceptable?
This is why words matter. In the oncology world, we throw around words and phrases that aren’t meant to be maleficent or to bring negative connotations to patients but can ultimately do so. While listening to the many abstracts being presented and countless hours of discussion between providers and experts in the myeloma field, I hear many of these words or phrases and they bring a pause to my thoughts.
Again, I want to clarify, I don’t believe anything negative is ever meant when saying them, but I think of how patients must feel when we say them. The first phrase that comes to mind is “patient failed study.” Let’s examine these simple three words. Failure is defined for us early in life by test-taking in school or by letter grades on a report card.
Further in life, failure can be viewed in a more mature and scholarly way as a motivational factor for progress and the truth is, we all fail at things —it is how we recover from them that proves our steadfastness. But how does a patient feel when hearing “you’ve failed the study?” Providers don’t purposely say this phrase to hurt or affect the patient negatively. It is simply a phrase that says this is not working and we need to move on to something different. However, that’s not how it could be viewed by a patient. A patient could very much take this phrase personally and feel a strong sense of guilt and regret that they’ve done something wrong to “fail this study.”
Another phrase that I think, as a whole, needs to be changed to become a more acceptable phrase is the term, “salvage therapy.” Salvage therapy, by definition, is treatment that is given after the cancer has not responded to other treatments. Why couldn’t the words, secondary treatment, tertiary treatment, etc. be used instead? From a patient’s perspective, isn’t that a much more palatable term in an already stressful and anxiety-producing situation? How about “manageable side effect profile?”
I have a firm viewpoint that the only way that a researcher can define a drug as having a “manageable side effect profile” is by giving patients the chance to define that. Who are we, as researchers, to define what is or what is not manageable for a patient? An example that I can give is something along the lines of “only 10% of patients experienced neutropenia.” As oncology providers, we know that neutropenia can be quite severely life-changing. Necessary dietary changes, social isolation, risk of infection, anxiety about all these things, depression due to all these changes —these don’t quite seem like something that, as a patient, I would determine to be “manageable.” Let us let patients define what’s manageable, not us!
For the last few months in my support group, we’ve been examining the term, “care partner” rather than caregiver. Patients and their support both can view the term caregiver in a negative light. In my experience as an oncology nurse, care partners need care as well! The patient is not the only person diagnosed with cancer. Cancer affects everyone in the situation, friends and family alike. Patients and care partners truly do look to each other as partners in this roller coaster after diagnosis, and that’s a healthy way to view the relationship. This healthier viewpoint allows both parties to actively verbalize their emotions, let go of guilt, and communicate more effectively about their needs throughout the cancer journey.
To me, awareness can be a catalyst for change. Ignorance is not always purposeful. If making others aware of these phrases or terminology helps to motivate more thoughtful choices in the future when it comes to terminology, then our job is not in vain.
Please, as a whole, let’s do better! Let’s educate, bring awareness, be the catalyst —our patients depend on us! This picture is of a t-shirt that I designed several years ago for the MD Half Marathon Myeloma Team. I love all the words on the ribbon that truly define myeloma patients: WE CAN AND WE WILL!
As I close out this last blog for ASH 2021, I need to try to use words to explain my gratitude to the IMF and our sponsors for the opportunity to attend ASH, to represent support leaders across the country, and to bring my viewpoint to social media outlets. I feel humbled, grateful, and blessed yet these words just don’t seem enough to express my thanks. We were asked to provide one word to describe how we felt about ASH 2021. What was mine? INSPIRED.
Becky Bosley, on Twitter @MidAtlanticMSG