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.
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.
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.
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.
Here are the words I vow not to use with patients and their families in 2018! #newyearresolution2018
Top 10 Words (and the most interesting and sometimes humorous explanations as to why!)
- 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 Patient Engagement?”
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?”
- 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!”
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?”
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.”
- 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?!”
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.
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.
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.”
- 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.
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??”
Please contribute to the Words Do Matter Project and help us shape the overlooked ingredients in healthcare!
What words would you suggest in lieu of these TOP 10? What words would you add to the list?
Excellent research and top ten list! Agree whole-heartedly that language and sentiment have a profound impact on relationships, especially the lens through which people view healthcare. Many of these terms exist because processes, workflows, innovations, platforms, and ideologies were created without consideration for the patients’ voice, preferences, values, and needs. Recognition of patients and carepartners as valuable and essential stakeholders of the healthcare ecosystem eliminates incorrect notion that patients (and carepartners) are on the periphery, rather than part of the conversation. Here are my thoughts:
1. Patient Engagement: scrutinizes patients with respect to response (or lackethereof) to various initiatives; doesn’t hold poorly designed healthcare system accountable. Indirectly (and incorrectly) assumes patients are not “good”, “disengaged” patients, assigns blame.
2. Patient Journey: better = life/living with [diagnosis]
3. Patient-centered: better = human-centered or relationship-centered
4. Co-create: better to design, develop, and launch with empathy
5. Compliance & Adherence: treatment planning must have consideration for patient values, preferences, needs as well as finances, social determinants of health
6. Survivor: alternatives may include person with no evidence of disease, no active disease; term is alienating to those with advanced/metastatic disease who will never be survivors.
7. Fight: war metaphors are damaging on many levels and contribute to mental and emotional distress, “survivor’s” guilt
8. Caregiver: carries negative sentiment, implies/defines a patient as unable to care for themselves, helpless, loss of independence. Term “carepartner” is more inclusive, spanning sickness and health, signifying a team effort.
9. Shared Decision Making: by including the patient’s values, preferences, and needs during treatment planning discussions, this term will be eliminated.
10. Negative: Words used to convey test results must be conscious of language and health literacy barriers. Simplify: Xray is normal.
Great post. To your list I add but a smattering of words I’ve collected that would seem crystal clear – along with meeting the right ‘criteria’ (one or two syllables, proper reading level etc) and yet still confound when out of context: gait, dressing, negative, positive, static, wound-care, dose, treat. Doing my Health Literacy and End of Life Planning presos and workshops,the range of interpretations gets in the way of meaningful universal understanding of all the words and concepts of this post. Separately: I wonder if anyone else sees the irony in using the word , Lexicon, when referring to Patient-Friendly ;-)
Language does have magical influence. I appreciate Sarah’s post. Let’s pause and break this down. Some of these ten words are names, labels, such as survivor and caregiver. While these aren’t slurs nor do they denote disrespect, they aren’t in and of themselves that descriptive without the story behind them. A person is always more than a label. Actually, I don’t like other people to label me. I’ve been labeled heterosexual, white, retired, disabled, male nurse, patient, caregiver, etc. Some labels I own, some labels feel limiting to me. When I’m with other people who share a label I may either feel solidarity or feel my uniqueness. Usually, I spend little time on the label. I’d rather hear stories, share experiences, what worked and what didn’t with the people with whom I’m sharing a label. When people write and use labels about me, I can’t help but think of exceptions. I am not the typical caregiver, male nurse, retired person. I guess.
Compliance, adherence, patient-centric, and shared decision-making have a power component. Who’s up, who’s down? As a patient activist, I would rather use Informed Decision-making or Health Care Choices than Shared Decision-making. But depending on the setting and my goals in the interaction, I may point out the implications of the word choices or I may not. In any communication, I can choose to focus on the words used and do some education. I could listen and try to understand what the person means by the words being used. If I feel the words are offensive, I could speak up, be silent, or leave the room. Up to me.
Words have history. Patient engagement was once a revolutionary new concept. Now it’s lost its meaning or it could mean so many different things. I’d rather engage in my care, negotiate engagement, or find a common meaning with the people I’m in the room with. I think there could be other words used. However, those new words will inevitably become diluted as well. I use journey a lot. I get so frustrated with the episodic view of health care: the visit, the hospital stay, the diagnosis. I prefer the journey, the adventure, the extended time, people, settings and the idea of a destination or goal. But I don’t care what words other people use, as long as it’s not based on diagnosis and episode. I’ll keep using journey.
Words are important. Especially if they’re offensive or as dilute as water. But they are also opportunities for sharing, learning, advocacy. I feel very strongly that refining words used is only step one in activism. More important to me is best health and quality of life; equity; personal, spiritual, food, and financial safety; respect; and community. And what do these words even mean? We listen, talk, and do. Hopefully, communication leads to action – action that we desire. The patient-friendly lexicon will always be dynamic. Participatory Medicine is part of today’s lexicon. I’d welcome the day when it gets added to the list as outdated and dilute.
Very much agree Danny. Words do not exist in a vacuum, but are given meaning by the participants in the conversation/interaction and by the words they sit next to. Replacing one term with another supposes that there ARE terms that contain meanings that are independent of context, culture, connotation.
As neither patient or working in the health/care sector, I’m always puzzled by the term co-production. To me it is associated with theatre or more likely television as in the credits for Mrs. Brown’s Boys.
So what on earth provoked a comment here, if you’re not in healthcare? :-) (Can’t help but wonder!)
Is anyone aware of the deadline for the IR Global Training Contract Application? Happy Holidays and many thanks for your friendship and support
Words are seeds that accomplish more than blow around. They land in our souls and not the ground. Be cautious what you plant and cautious what you say. You could need to eat what you established one day.