The Hospice Doctor Didn’t Mean Mac & Cheese

Mac & Cheese

Food is not a humorous subject with hospice patients and their families . . .

When the hospice medical director reminded the patient’s nurse to get a mac, my stomach grumbled.

The nurse nodded. There seemed to be an immediate, unspoken agreement.

A mac? What did the doctor mean? They couldn’t mean a Macintosh computer from Apple, could they? That didn’t make sense. But thoughts of digital apples made me think about real food: had they meant Mac & Cheese? While I’m not a fan of the packaged pasta and cheese, it is one of my wife’s favorite comfort foods.

My food wondering continued. What about a Big Mac? Could the doctor have been recommending a fast food burger? (When younger, I loved McDonald’s flagship burger. The Big Mac debuted, with fanfare and a high calorie count, around the time I started college. If I could scrounge a few extra quarters, I’d always go for the extra all-beef patty and special sauce!)

But we hospice professionals couldn’t have been talking meal deals . . . right?

Ever ignorant, I wondered aloud, “What is a ‘mac?’”

“It’s the measurement of the mid-arm circumference,” the good doctor replied. She quickly gestured toward her arm, between the elbow and shoulder, and then we continued discussing new patients.

Ah-ha!

I’d actually known about this measurement before, but had somehow missed the MAC (Mid-Arm Circumference) acronym.

A high percentage of patients enter hospice care in a disease’s final stages and have a rapid decline. Maybe a few months before, everything seemed “normal,” but cancer and cancer treatments cause many losses, including weight. Patients literally, and quickly, waste away. Their decline is as obvious as it is unsettling.

But other patients struggle with illnesses (for example, dementia or COPD) that slowly weaken the body. The MAC measurement becomes an essential “tool” to gauge a patient’s current status and future support. In order to continue in hospice, there must be verifiable proof demonstrating a decline. Our discussions about the “progression” of patients’ illnesses represent one of the strangest (and, for me, saddest) requirements in our work. Hospice care, covered by Medicare or other private insurances, is expensive. Each patient’s situation is reviewed every few months. New information is placed in patients’ charts. The “new” data is compared to the “old” chart entries.

One of the potential facts includes weight loss.

But some don’t appear to lose weight even as a disease weakens their vulnerable bodies. Illnesses, and the medications used, can mean bloated bellies and water retention in legs. We may think that weight gain is good when someone is seriously ill, but the stress on the body when it “retains” liquid adds to the long list of frustrating health burdens for patients.

The MAC measurement is a helpful benchmark. Unlike the legs, ankles, and feet, there is less of a chance for liquid to accumulate in the mid-arm. Measuring that area on a regular basis offers simple, comparable proof of a patient’s decline.

Sigh.

None of this is easy. Not for the patients, and not for the families scrambling to support loved ones. It’s hard to experience or witness a slow decline. It is also not easy for hospice nurses. She or he feels the intense pressure of caring for their patients, but they must “justify” why someone continues to be appropriate for hospice.

When I first heard the doctor suggest the MAC, food was part of what I humorously considered. However, food is not a humorous subject with hospice patients and their families. Though they understand their loved one has a terminal illness, many will continue to try to feed them.

Mac and cheese? Maybe.

Soup? Of course, who doesn’t agree with the medicinal qualities of chicken noodle soup?

Won’t the patient take a little nourishment to get “better?”

As I’ve written before, and will probably write about again, hospice patients can arrive at a point where there’s little or no interest in food, or even sips of water. Comfort food—or any food, solid or liquid—isn’t comfortable. The hospice nurse will (I hope) gently, honestly inform the family that this may be the case for a beloved grandparent, parent, spouse, or sibling.

Eating no longer matters.

Sometimes, the changes from a disease are subtle and the patient looks nearly the same each new day. Please, won’t a little food help? When the patient says no to food, and the nurse agrees, it feels like patients are “giving up” or the caregiver is “starving” them and hospice is assisting those “negative” efforts. But the nurse will sit beside your loved one to measure their arm. The MAC will reveal that the circumference has decreased by another .5 or 1 or 3 centimeters compared to last week or month.

The slow, awful, and fatal illness continues.

A patient may have no interest in fast food or comfort food, but your presence beside your beloved, and your support of them, can be the best comfort of all.

(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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