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#WordsDoMatter for Action

By January 7, 2018December 6th, 2023Advocate, Caregiver, ePatient, Written Only
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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? See Sarah Krug’s post on the Society of Participatory Medicine blog, The Power of Words in Healthcare: A Patient-Friendly Lexicon. Top 10 List #WordsDoMatter Project.

Sarah offers 10 words she vows not to use with patients and their families in 2018!

  1. Patient Engagement
  2. Patient Journey
  3. Patient Centric
  4. Co-Create
  5. Compliance/Adherence
  6. Survivor
  7. Fight
  8. Caregiver
  9. Shared Decision-Making
  10. Negative

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.

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