In other words, we don’t comprehend the word or the statement. It doesn’t make sense.
That’s what I first thought about dysphagia when I started hearing it in hospice.
In the case of dysphagia, it’s literally a Greek word and problematic to pronounce (dis-fay-gee-a) for most folks. The roots of the word are relatively simple. Dys is a prefix for, “No.” Think of the more commonly used dysfunctional or—because of the Hunger Games novels and their ilk—a grim, unsettling future world known as a dystopia.
Dysfunction = no function.
Dystopia = no good place.
The suffix phagia, though obscure and probably never used in our day-to-day conversations, also describes a familiar activity: eating. Medical professionals use dysphagia to identify patients that have difficulty with swallowing. In other words . . .
Dysphagia = no eating.
Often, as patients near death, they can’t eat solid food and/or frequently struggle with fluids. In the last weeks of my father’s life—in his mid-90s and suffering with dementia—he couldn’t even drink “regular” water. His hospice nurses used a supplement and prepared specially thickened liquid to provide him with minimal nourishment. For some hospice patients, discovering the right “thickness” for a liquid can parallel the Goldilocks and the Three Bears fairy tale. Rather than the bear’s porridge being too hot or too cold, is the fluid too thick or too thin?
When a loved one becomes dysphagic, it’s a tough on family and friends. Even though we are a diet and weight-obsessed culture, how we love to eat, drink and be merry! Whether craving a cheap In-N-Out burger or a pricey meal at five-star restaurant, we enjoy food . . .
Let’s do lunch!
Want to grab some coffee?
Can you come over for dinner?
We’re all going for drinks after work!
Hey, heard about that new Mexican-Thai bistro?
The absence of food, the inability to hoist even a tiny forkful of your favorite lasagna or to nibble a smidgen of oatmeal, indicates a patient may be nearing death. Hospice nurses might witness this resistance (or inability) to eat and use it as an opportunity to explain to the family the changes happening in a patient. Families (and rightly so) can be reluctant to listen—it’s not just a patient, but their beloved who is not eating. Please, isn’t there some way for him or her to return to eating?
However, I’m equally concerned with a less literal version of dsyphagia.
Many don’t easily “swallow” hospice as an option for care. Though the modern concept of hospice started in 1960s England, and has been covered by Medicare since 1983, even physicians can be resistant to hospice. The oncologist, neurologist and surgeons, for all of their combined acumen, may have trouble “swallowing” human mortality. How often is quality of life ignored in the pursuit of surgery or chemotherapy? After all, we’re all terminal. Ironically, research (including a survey of physicians by Stanford University in 2013) indicates that most doctors would personally refuse the “life-extending” options they suggest to their patients.
Families also wrestle with a hospice decision. They too resist “swallowing” hospice as a life-affirming next step. Isn’t there one more procedure or miracle drug to cure a loved one? Instead of dying with dignity, the final days/weeks might focus on a one-more-thing rather than a time to focus on caring for your beloved.
I understand why speaking about death gets stuck in our throats. But still, I hope that long before a medical professional describes our beloved as dysphagic, that more of us will honestly talk with each other about our fears, wishes, and life-affirming decisions.
(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.)by