Language has a magical influence on the lives we lead, with an impact on our thoughts, emotions, and/or actions. The words we use are one of the most potent ingredients in the science of language. Words have the power to heal, guide and motivate. They can confuse, mislead, and even hurt us. The intent of a spoken word can often be misinterpreted leading to an unintended consequence. The majority of our words are a result of habit and convenience. If we follow the ripple effect of our words to understand the emotions and/or behaviors they might potentially trigger, would it force us to pause, think and perhaps communicate differently? There are terms and phrases that those of us who work in healthcare use regularly. Some of these words have been around since the turn of the century…and others are newer and somewhat trendy. In my work with patients and their families, I have found that many would rather us skip some of this terminology in our conversations with them. I’ve captured thousands of terms in my research and I’ve been working with members of the community to identify new terms to consider, which can allow us to redesign the language we use with patients and their families in healthcare. There are words that we might continue to use in exchanges with one another as healthcare professionals, academics, researchers, advocates, etc, but this project was focused on the language we use with patients and their families.
Why? Connection is a conversation between the patient story and the language of medicine. Words have the power to transform healthcare and if you don’t speak their language, they won’t hear you. How? Since 2016 when this project launched, 3, 842 words/phrases have been crowd-sourced where we asked “What word(s) should we stop using or limit use of with patients and/or their families? Why?” The submissions were analyzed and the TOP 10 words are listed here based on the most common words suggested. There are plenty of other words that don’t make sense to patients and their families, but we’ll start with the Top 10 and continue to build on these.
Top 10 Words (and the most interesting and sometimes humorous explanations as to why!)
#1 Patient Engagement The use of this trendy word skyrocketed several years ago and has led to start-ups, tools, apps, workgroups, behavior change strategies, research studies and mission statements (among other things) all focused on this topic, without a consistent definition of what it actually means. No wonder the most popular Google search on this term was “What is
Here’s what a patient had to say which is indicative of how easy words can get lost in translation, “Last I checked, engagement was a formal agreement to get married. How does that apply to healthcare??” Another patient explained, “ It’s a paternalistic term. If I don’t want to track my symptoms using your app and don’t want a weekly call, does it make me non-engaged? I don’t always want to be reminded that I am sick but I’m managing my health to the best of my ability, while managing life. Why does it have to be one size fits all?” #2 Patient Journey With the prevalence of journey mapping, this term has become widely used in our circles.
As one patient put it, “ A 6 day trip to an exotic place that I’ve happily planned with an origin and destination is a journey. The multiple sclerosis I have or the cancer my husband got a few years ago—that’s not a journey!” #3 Patient-Centric Although the Institute of Medicine defines patient-centered care as: “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions”, many in healthcare have deviated slightly and used this term in different capacities to define strategies now focused on the patient.
“This seems fairly new and I hear it all the time now. What were you focused on before you became patient-centric? It makes me wonder if this is just marketing buzz. Also, if the goal is partnership (and maybe on even terms), shouldn’t I be part of the circle instead of in the middle?” #4 Co-Create This term has risen in popularity given the focus on design thinking principles and partnership in healthcare, yet it has left several baffled (and not just patients)!
In a meeting of the minds, a patient advocate said (and I paraphrase here but this led to a roar of laughter and hopefully won’t offend anyone), “We would never use the word co-create with our patients. Let’s co-create! What does that even mean? It almost sounds like procreate.” #5 Compliance & Adherence These two words aren’t new to the “no-no” list, yet many of us continue to use them.
One of the most direct responses as to why we should stop, ”Pick up a dictionary or a thesaurus to see how insulting these terms are! These words are synonymous with OBEDIENT, SUBSERVIENT, SUBMISSIVE, and PASSIVE. Non-adherence is equivalent with delinquency? Aren’t we in the 21st century?!” #6 Survivor This word isn’t new to controversy either with question on whether it’s cross-culturally acceptable.
“It’s a pessimistic label that forever ties me to a traumatic event in life, “ eloquently explained a patient. #7 Fight This has been the subject of research projects with reference of war metaphors connected to a feeling of guilt and/or failure.
“I may come out swinging but if I don’t win the fight , did I not fight hard enough? Am I loser?” asked one patient. #8 Caregiver This has different meanings in other countries, such as a nanny or au pair.
As one caregiver articulated, “I don’t see myself as a GIVER of care. I’m a wife that’s confused and just trying figure out how to help my husband manage his mental health and my family cope.” #9 Shared Decision Making This is a topic that’s been around for many decades with various models, guidance documents and decision aids introduced over the years. There is still much work required in effective implementation within the average clinical setting (e.g. community practices).
“I understand that patients and families are playing a greater role in their healthcare and ideally there is more exchange and sharing of bi-directional information, but isn’t the final decision made by my wife after we’ve also gotten a second, and maybe even a third opinion, done our research, figured out what insurance is paying, and then figured out what’s best for us right now? It’s ultimately my wife’s decision—not a shared one,” described a caregiver. #10 Negative This term has been the source of confusion for quite sometime, yet lives on in healthcare conversations. Healthcare professionals often use this term to describe “normal” but it can lead to a wave of panic until further clarified.
“ When the doctor told me that I had a negative chest x-ray, I was devastated. How would I know that means normal??” Next Steps: The next steps are to involve the community (YOU) in the “Words Do Matter” Project with your feedback and suggested alternative terms. We will continue our current participatory co-design work with patients and their families to develop a new set of terms that can be used with patients and families. We will also conduct a few “Man on the Street” interviews to supplement this work. Ultimately, the goal is to develop a patient-friendly lexicon in collaboration with patients, caregivers and the broader community.
How to Get Involved:
Co-Design the future and get involved.We're working with members of the community across all sectors to co-design a new patient-friendly lexicon. Tell us what words you would suggest in lieu of the Top10?