Hospice

How Much Time is Left?

One of the hospice home health aides (HHA) went to a patient’s home. Among other things, she gave him a bath. Let’s call our HHA by the name of Jane.

“About how much longer will this take?” the patient—let’s call him Arturo—asked.

I don’t know if this was the first bath for Arturo, or if Jane had given him a number of baths over the prior weeks. In hospice, the aides are a critical part of a patient’s care. They do the grunt work of supporting the patient when he or she is most vulnerable: showering or bathing, brushing teeth, commode duties, and helping ensure there is safe movement from a wheelchair to a bed.

Maybe a patient is incontinent with bowel or bladder. Some patients complain often, others make every visit a delight. In certain homes, the caregiver—perhaps the patient’s spouse or daughter—fears making a mistake and the HHA will teach—a literal show and tell—some of the better ways to help with the “simple” tasks for a loved one.

When a patient takes a bath, naked as a newborn, he is vulnerable. When a patient begins to trust the HHA with her failing, fragile body, she’ll reveal fears about living or dying. He might share childhood tales or family memories. She might talk about an ancient guilt or a recent regret.

And many times, patients will ask questions . . . Read More →

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I Just Wanted Her for One More Day

Several years ago, our hospice team gathered to discuss the day’s work. Not long after we began, a veteran nurse wept when sharing about the death of one of her assigned patients . . . a child, not yet school age. The nurse had cared for and supported her tiny patient since birth.

How can any infant or child (and their families) be burdened with the phrase, “hospice appropriate,” and yet they are.

Family, friends, doctors and nurses knew this day would come. Born with a life-limiting illness, and given the best possible medical care and an abundance of love, there was no hope for the child to reach the teen years, let alone a “normal” life. However, I’m confident prayers for a miracle were whispered. Bargains were made with God. Any optimistic hint from a doctor’s comments, or rumors of new experimental treatments, was enthusiastically grasped.

The child died. And that nurse cried.

Everyone in the meeting seemed staggered by the death. We knew it would happen. We were not fools. If it didn’t happen last year, it could be this year. If it didn’t happen last month, the child’s death might happen the next day. But death came on this day, and a child’s moments on earth ended, still young enough so that anyone could easily count the literal number of days lived. Read More →

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Sometimes (talking about) Death Gets Stuck in Our Throats

Have you ever heard someone react to a comment by responding, “That sounds Greek to me!”

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.

Huh? What?

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. Read More →

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