The patient has dysphagia . . . huh?
I might react by responding, “That sounds Greek to me!” In other words, I don’t honestly don’t get it. It doesn’t make sense.
In the case of dysphagia, it’s literally a Greek word and probably hard 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 novels like the Hunger Games series—an unsettling future world referred to as a dystopia. Dysfunction = no function. Dystopia = no good place.
The suffix phagia, though more obscure, is also relatively simple: eating.
Medical professionals will use dysphagia to describe patients that have increased difficulty in swallowing. In other words, no eating.
Often, as patients near death, they can’t eat solid food and frequently struggle with certain fluids. In the last weeks of my father’s life—in his mid-90s and suffering with dementia—he couldn’t drink water. His hospice nurses prepared specially thickened liquid to provide him with minimal nourishment.
When a loved one becomes dysphagic, it’s an excruciating time for family and friends. Even though we are diet-obsessed culture, we love to eat, drink and be merry.
Want to grab some coffee?
Can you come over for dinner?
How about that new restaurant?
Let’s do lunch!
The absence of food, the inability to hoist a fork of your favorite lasagna or even to nibble a smidgen of oatmeal, indicates a patient may be nearing death. Additionally, for some dying patients, the presence of food will add to their complications. There may come a time when a patient literally can’t—or doesn’t want to—eat. With some overwhelmed families, already disagreeing with how to best care for a beloved, the debates over a bowl of broth or adding an IV for nutrients become emotional combat where everyone loses, including the patient.
However, I’m also 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? We are all terminal.
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 diet or second opinion or medication or prayer to miraculously 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 enjoy and care for your beloved.
I understand why speaking about dying and death gets stuck in our throats.
But still, I hope that long before a medical professional describes someone as dysphagic, that more of us will honestly talk to each other—using our wide-open throats and kind hearts—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