Food Matters for Hospice Patients

DietDuring patient care meetings, a hospice nurse would report that a patient had started on “a mechanical soft diet.”

What was that?

My serious side guessed something happened to the food for easier swallowing and digesting. But I confess to imagining expensive equipment—with complex moving parts—processing a meal before it arrived on the patient’s plate. Maybe the food was delivered from a secret laboratory to the patient’s home?

Don’t astronauts require special preparation and packaging for dining in space? The U.S. military has the MRE—Meals Ready to Eat—for troops in locations without portable or permanent mess halls. I’ve hiked with freeze-dried food stashed in my pack. Whether orbiting the earth or exploring wilderness, weren’t some “mechanical” steps taken to create those meals?

I asked a nurse.

She explained, “It’s when the food is cut into small, bite-sized pieces.”

No surprise, it was a fancy name for a simple procedure. However, it also has more elaborate descriptions:

Mechanically altered diets consist of foods that can be safely and successfully swallowed. Foods are mechanically altered by whipping, blending, grinding, chopping, or mashing so that they are easy to chew and swallow.

Patients can struggle with swallowing. In hospice, the challenges with food may be from the progression of the illness or recovery from a procedure. Other diets may be required, such as only eating pureed food. For some there’s a need to add a thickener to their liquids.

Food is always one of the most difficult aspects of caring for a dying loved one.

We want our parent or spouse or best friend to be “well fed.” Probably everyone has faced hunger. Some have been only briefly hungry; others sadly face hunger on a troubling and daily basis. None do well without food. And then when a first meal enters our system . . . we feel better. After a long stretch of hiking in the mountains, I’ve eaten freeze-dried food dubbed with fancy names—Turkey Tetrazzini, Katmandu Curry, Mountain Magic Meatloaf—that looked grim in the cooking pot. But I licked the bowl to capture every single molecule. I needed that energy!

But in hospice, our loved ones may slowly (or swiftly) arrive at a point where how much food is eaten and how it’s prepared will change. To swallow the meal, someone will first need to do “blending, grinding, chopping . . .” Preparing those servings will be simple to accomplish. It will also be easy to buy drinks like Ensure—with its makers touting it is a “complete, balanced nutrition for everyday health”—when your loved one needs supplements or can no longer handle solid foods.

Preparing or buying the meal may be “easy,” but it’s never easy to consider.

When a patient declines, they often eat less.

In hospice, we also estimate the amount of food eaten. Are they still having two or three meals a day? How much is finished? Everything on the plate? 50%? 25%?

Meals Ready to Eat (MREs)

Meals Ready to Eat (MREs)

Astronauts probably complain about the food they must eat. Soldiers, hunkered down in a scary spot, definitely complain about the food they’re forced to gobble . . . even as bullets are flying. I know from experience that the freeze-dried food I greedily ate, even with mountain grandeur surrounding the campsite, received complaints from my hiking companions and me. We’d gripe as we spooned the stuff into our bodies.

But there comes a time . . .

For a loved one in hospice care, she or he may physically not be able to eat. Certain diseases, and the medication used for pain control, causes patients to become drowsy much of the time. Certain diseases, even when the patient remains alert, have damaged the body and there’s no way she or he would consider eating.

Some patients simply (though it’s never simple when this time arrives) don’t want to eat anymore.

The worst thing a loving caregiver can do is to try to make them eat.

Whether it’s begging a husband or grandmother to take a spoon of tapioca or demanding the hospice nurse place an IV so that a best friend or favorite uncle can receive fluids, we become desperate to continue feeding the patient. We use guilt, even as we feel guilty. We bargain, setting up everyone for losing. We threaten, refusing to voice our deeper fears about vulnerability and loss.

Food, even the awful MRE, is life!

I urge family and friends to do the nearly impossible: pay attention to your loved one’s real needs. Eventually, they may only want tiny slices of cheese, or buttered toast cut into melt-in-the-mouth portions, or a smidgen of fresh fruit swirled into yogurt. It is likely, and maybe soon, when they will only swallow sips of a thickened liquid.

And it’s likely—when still able to chat, still able to hold your hand, still smiling at family stories, still waiting for the grandchild to arrive for a visit—they will no longer want to eat.

Sometimes a patient doesn’t eat or drink for days. And days. Caregivers are anguished. How can this be? Isn’t their loved one dying a terrible death? The hospice medical staff will give you gentle and well-researched reasons for a lack of eating . . . but all reasons seem inadequate.

A part of you, if your loved one has stopped eating, would cross oceans if she or he would just try another bite of applesauce. Regardless of what I write or your hospice nurse explains, dealing with food will be a struggle.

If only there was a mechanical soft explanation to help families understand why food may no longer be needed or desired.

If only there were a few easy-to-digest, bite-sized reasons that would make perfect sense.

If only . . .

(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.)

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Comments

  1. Thank you for reminding me of a wonderful (awful) memory of my grandfather. He was days away from death and still at home. He had throat cancer so everything had to be liquefied in the blender. The poor nurse asked him if there was anything she could do for him as she prepared to leave and he whispered he wanted one last meal and she smiled and said if it was in her power she’d get him whatever he wanted. He told her he wanted a bologna sandwich. She explained that since he could not swallow it might not be the best choice, but he insisted. She made him that sandwich with mayo, pickles, onion and a slice of tomato, put it in the blender and quietly fought her gag reflex as she scrapped the sides, poured it in a bowl and helped him with the spoon. He swallowed about half of it, belched and thanked her. That nurse was a saint! I’m sure she shared that story more than once, our family shared it many times with her always being the hero.

    • Well, kinda thanks for sharing. Now I have a different mental image about bologna sandwiches!! But I agree . . . that nurse was a saint, going above and beyond with her thoughtfulness and a handy blender!!

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