With Hospice, Maybe Tomorrow Should Be Today

Scarlett O'Hara

My mother loved Gone With the Wind.

As a teen, she may have first seen it in 1939, the year it premiered. Much, much later, I watched it with Mom on television. Though I’m not a fan of the famous, sprawling film, who can forget the closing moment?

“Oh, I can’t think about this now! I’ll go crazy if I do! I’ll think about it tomorrow. But I must think about it. I must think about it. What is there to do? What is there that matters? Tara! Home. I’ll go home. And I’ll think of some way to get him back. After all, tomorrow is another day.”

The music swelled, and soon the final credits rolled as—viewers may forever assume—the clever Scarlett O’Hara schemed to rebuild Tara and perhaps get Rhett back and, well, keep living like there were 10,000 tomorrows.

Which finally leads me to ask: what’s your excuse for avoiding hospice?

Though hospice has been a Medicare benefit since 1982, it remains a “tomorrow” subject for many.

  1. I’m not that sick. Go bother someone near death’s door!
  2. I’ll be better soon. I’ve always bounced back before.
  3. No one’s giving me any dopey drugs. I have stuff to do!
  4. If you say “death” aloud, I’ll die sooner! Shhhh, be quiet!
  5. Hospice is for those dying from cancer. I don’t have cancer!

A few weeks ago, during a lull in the morning patient care meeting, I glanced through the printed list of our current patients: when they entered hospice care; their primary doctor; the names of their case manager nurse, social worker, and chaplain. We also indicate a patient’s diagnosis.

How many continue to assume hospice is for cancer patients? At the beginnings of the modern hospice movement, most probably were cancer patients. But it’s different now. My cursory scan included illnesses like COPD, alcoholic cirrhosis of the liver, congestive heart failure, coronary atheroscierosis, paralysis agitans, multiple sclerosis, and dementia.

And, yes, various cancers were on the list.

As a medical outsider, I’m often unsure about some diseases. Prior to my hospice work, I didn’t know that “paralysis agitans” was Parkinson’s. I’m familiar with certain fatal illnesses only because they’ve been in the news. Since my father had dementia, I learned there were differences between Alzheimer’s, Lewy-Body Syndrome, and vascular dementia.

According to the most recent available* statistics (2013-14) from the National Hospice and Palliative Care Association, a little over a third of hospice patients have some form of cancer:

Cancer: 36.5%

Other:   63.5%

Dementia: 15.2%

Heart disease: 13.4%

Lung disease: 9.9%

Other: 6.9%

Debility Unspecified: 5.4%

Stroke/Coma: 5.2%

Kidney disease: 3%

Liver: 2.1%

Non-ALS Motor Neuron: 1.8%

Amyotrophic Lateral Sclerosis: 0.4%

HIV/Aids: 0.2%

Not long after my quick inventory of patients’ illnesses, I met with a long-time hospice volunteer. She mentioned a planned visit with her grandfather to discuss hospice care. Her stubborn grandparent had apparently had been avoiding the subject with Excuse #5: Hospice is for those dying from cancer. I don’t have cancer! The volunteer and her family were dreading the upcoming conversation. Or, in other words, the looming family battleground of denial, excuses, and silence.

While I could’ve told her about the 63.5% of patients who don’t have cancer, I doubted statistics would impress this cranky fellow. However, I did suggest that a hospice nurse could visit him at his home. The nurse could provide information and answer questions.

“Really, a nurse will come out to his home?” the volunteer asked.

“Yes,” I replied.

“He’ll ask if they charge anything!”

“No charge. It’s free.”

“Really?”

And I added, “He won’t be obligated to enter hospice care. The nurse will give an assessment, based on information from him, his doctors, and his current status. If he doesn’t feel ready for hospice, the nurse will walk away, but he and your family will know more.”

“Really?”

Really. Having a conversation like this with a dedicated hospice volunteer surprised me. Didn’t she already know this?

But we don’t.

Or we do know and then forget. Or we do know and everything is so overwhelming right now, we forget what we remember. I do understand why some think hospice is just for cancer, or why others assume you have to be several grim breaths away from death to trigger Medicare’s benefits. As a guy with many daily excuses about cleaning the kitchen or mowing the lawn, I also understand why people put off even the most important decisions until (thank you, Scarlett) tomorrow.

Now at least one volunteer now knows she can have a no-obligation family chat with a grumpy grandparent. Maybe, or maybe not, he’ll be appropriate for hospice. Maybe, or maybe not, he’ll listen to a hospice nurse’s advice. Maybe, or maybe not, he’ll decide that it’s time for comfort care rather than more attempts at a cure. Maybe, or maybe not, he’ll realize that even if he doesn’t have cancer, he shouldn’t ignore the difficult truth of his health concerns.

Who among us doesn’t have Scarlett O’Hara’s blood flowing through our obstinate veins? Maybe, tomorrow, if you’d like to, you could invite a hospice nurse to visit and discuss your or your loved one’s options. There’s no obligation and it’s possible you’ll gain new insights.

What’s your excuse not to?

(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.)

*According to the National Hospice and Palliative Care Organization, the 2017 statistics are soon to be released. I’m guessing the disease percentages will change . . . but probably not by much.

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Comments

  1. This is such a difficult conversation to have. I remember a dear cousin and I had a conversation about her mom needing more help than she and my uncle could manage as her mom’s physical health required more and more stuff that needed professional help. My uncle spent most of his day doing what a trained person could have done in minutes. That assessment showed my cousin was correct and my aunt almost silently accepted the extra help. Somewhere in there, I think she could see her husband struggling to meet her needs. When she asked who’s recommended hospice, I was given credit. She never forgave me. She never looked in my direction or acknowledged me again. I don’t regret my part in her getting the care she deserved but it came at a heavy price. I’m glad hospice has people like you educating the public. Such important work.

    • Thanks, Sierra!

      You point out one of the possible emotional side-effects of encouraging others to seek help. We humans are stubborn, independent, and don’t want to “be a burden.” Sometimes we also don’t want to spend an extra buck. But even after being convinced that help is needed, there will be folks that blame the truth-telling messenger for the changes that were necessary. Doing good doesn’t guarantee we will feel good.

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