Hospice: Understanding the Unpronounceable

In a hospice meeting, there were a dozen or so huge, clunky words on several patients’ charts that underscored my medical ignorance. But one stood out because it had appeared on a couple of charts and was the longest of all of them:

Thrombocytopenia

Because it’s easy to scour the internet for clues after seeing the strangest of words written on patient summaries or spoken by hospice colleagues, and because my search included the Mayo Clinic’s website, I’m confident that,

Thrombocytopenia is a condition in which you have a low blood platelet count. Platelets (thrombocytes) are colorless blood cells that help blood clot. Platelets stop bleeding by clumping and forming plugs in blood vessel injuries.

Thrombocytopenia often occurs as a result of a separate disorder, such as leukemia or an immune system problem. Or it can be a side effect of taking certain medications. It affects both children and adults.

Knowledge is power. Knowledge leads to better choices and decisions. Knowledge can be the difference between feeling overwhelmed and helpless vs. planning and taking future steps.

Nonetheless, some words intimidate. And not just in the medical/hospice realm. Like many kids in my generation, the film “Mary Poppins” introduced us to the silly and ridiculously long: 

Supercalifragilisticexpialidocious

I recall it was during college days—perhaps a class, perhaps a late-into-the-night dorm room debate—that I first learned a word that seemed as serious as it was full of vowels. Just saying the word felt like a task had been started and completed:

Antiestablishmentarianism

According to Webster’s Dictionary, the “official” longest word in the English language (and no surprise, it’s a medical term about a lung disease) contains 45 frightening letters and a token hyphen:

pneumonoultramicro-scopicsilicovolcanoconiosis

You can embark on your own quest for lengthy, complicated words. But what does this have to do with my eyes glazing over at a medical chart, wondering what a 16-letter word means? And since I quickly and efficiently discovered it was a 7-syllable word involved with blood platelets, what does it matter in terms of sharing any insights about hospice?

Words scare us.

Words that we don’t understand especially scare us when they are used to describe . . . me. The unfamiliar and unexpected (and unfair) words that have barged their way into my diagnosis and my life seem like literal body blows. It’s one thing to chuckle at Julie Andrews and Dick Van Dyke singing a happy song in a happy movie about happy events. But it’s another for me to pronounce (or mispronounce) a tongue twisting word that defines and confines my not-so-long future.

When patients enter hospice care, they and their families will hear odd words followed by more odd words. Inevitably, some will be medical. But there are also state/federal/military forms with strange abbreviations. There are insurance documents with byzantine phrases. On our best days, we’d be hard-pressed to understand the new and numbing words. And hospice, for your loved one or you, never happens on anyone’s “best” day. What will you do when faced with those scary, multisyllabic beasts? And that are intimidating? And that are referring to you?

I hope you will say you don’t understand them, but want to.

Demand explanations.

When staff from a hospice asks if you understand, choose to use the power of one of the most effective one-syllable words in the English language:

  1. Yes
  2. No

If you gave me a pop quiz tomorrow about thrombocytopenia, I’d be fortunate to recall it has something to do with blood and platelets. But if it impacted me—not as a word I’m merely curious about, but as a word describing my ailment, my treatment, my prognosis, my rights as a patient—then I want to make sure I know and remember it.

Don’t let any word confuse you. Do you understand it? Yes? No? Ask for the definition.

Few medical words make any of us feel supercalifragilisticexpialidocious, but no word, even the worst ones, should remain unknown if it’s about you or a loved one.

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

Thrombocytopenia image from: here.

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Comments

  1. So important to understand what is being said. If I don’t understand something I ask the person to write down the word or phrase and they are usually happy to give me a definition or an example.

    Thanks Larry

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