It can be a overwhelming to comprehend information about hospice care when a loved one enters the final stages of life. Whether a long struggle with heart disease or a sudden cancer diagnosis, most have never considered hospice’s options and limits.
But then, with honest conversations and tenderness, a family decides hospice is the best choice. However, what if a family is panicked and desperate to get a loved one out of the hospital? What if hospice seems like the awful but only possibility to achieve that goal? Or, what if a family is in denial until the doctors announce “there’s nothing more to do?” What if that denial continues, with the family still not discussing dying or death as their beloved enters into hospice care?
Regardless of how calm or frantic the decision-makers are, even the simplest explanations about hospice can seem like Star Trek’s Scottie has beamed you to the wrong planet. There will be assumptions and selective listening.
Hospice said a nurse would be here all the time!
I thought all the medications were free!
Aren’t there pills to make the pain vanish?
Hospice said Dad would sleep and not feel anything. But now he’s awake and agitated.
Mom can handle the pain and wanted to be alert for the grandkids. But now she’s drowsy.
My husband was told he could die at home. But now he can’t?
My sister was told she would not die at home. But now she will?
Even at our best, we are selective listeners
I typically ask my wife to repeat the details of her daily schedule. Several years ago, she led an afternoon workshop for elementary teachers. When she didn’t return at the stated time, I went into worry mode. It was dark. I knew she silenced her phone while teaching so I wasn’t surprised she didn’t answer texts. While confident she’d gone to one of the city’s elementary schools, there were seventy different campuses! (That number is from my post-panic research.) I’d only heard her talk about when she’d return home. The dark outside grew darker. Then she returned. A workshop participant had lingered to ask questions. Truth be told, my listening to the person I love the most was based on my needs (when will she return home) and I never heard other information (the stupid name and location of the school).
Hospice never enters your home at the best time
You want your loved one to be comfortable. You fret about finances and missing work. You are anxious when talking to nurses or physicians because of a bad hospital experience or medical jargon is confusing or you were raised to never question doctors. Probably all three (or more) of those possible reactions are jumbled together as hospice enters your home.
We listen, but we can barely hear because of the ache in our hearts.
We hear just fine, thank you very much, except it’s often only what we want to hear.
How, with our frantic urgency, can we understand what hospice really does?
Let me suggest several key facts about hospice. I chose these because I frequently hear variations of them regarding end-of-life care.
+ The hospice staff does not move in with you. Hospice provides support for the people taking care of the patient. Though patients may be at nursing homes, hospitals, or hospices with in-patient beds, most remain in their private residence. According to 2020* figures, 56% of all hospice patients in the United States were at home (and stayed home). The nurses, social workers, health aides, and other staff will visit your home on a regular basis. The pandemic has caused (and may continue to cause) restrictions for visit frequencies. However, family and friends (and often hired caregivers) provide the day-to-day support to the patient.
+ Helping patients be as comfortable as possible may take time. Everyone is different because of allergies, prior abuse or lack of use of drugs, religious issues, interactions with other medications, etc. One patient may prioritize staying alert and accepts more pain. A different patient may prefer to be as pain free as possible and is drowsier much of the time. People also will declare, I’m fine (which is the world’s most popular lie) and hide their level of pain. Nurses must guess about medication dosages and frequencies.
+ Hospice will NOT kill you. Blunt, eh? My eighty-something mother, after two operations that failed to ease the wreckage caused by stage-four cancer, suffered more from the surgery than the disease. At one point, nearly hysterical, she demanded the pill to end everything. She knew I worked in hospice. She claimed we’d talked about this one pill. My beautiful Mom felt helpless, in the cruelest pain of her life. Now years removed from that horrible time, I can rationally comprehend Mom’s request. She wanted the physical, spiritual, and mental suffering to end now! Though dying before entering into hospice care, a regime of drugs managed Mom’s pain. But there’s a grim variation of her plea. Some people fear hospices use a version of one pill, of giving drugs that quickly end a person’s life. Nope. Bluntly speaking again, that does not happen**. It is the disease that is killing you or your loved one. Everything done by hospice is for comfort care.
I could have chosen other aspects of hospice care that are essential to remember. But three is enough if you happen to stumble upon these words in what may be one of the most unsettled times of your life. I hope you ask your nurse—or social worker or chaplain—any other questions that, like flashfloods in the desert, keep threatening to drown you.
Do people selectively hear when hospice is explained? How can they not?
There are no stupid questions, but there are unasked ones.
It’s fine to repeat questions. Really, it’s fine to repeat . . .
Please, start or keep asking your questions. Please.
Wherever Scottie has beamed you, questions are always better than silence or assumptions.
[Photo by Annie Spratt on Unsplash]
* 2020 statistics from the National Hospice and Palliative Care Organization (NHPCO) are HERE.
** Mistakes can and will happen. Those errors are amplified in social media and elsewhere on the web. Humans tend to more quickly complain than offer praise and I suspect it’s easy to find a negative story about hospice care.
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A Companion for the Hospice Journey is available at Amazon.
"I just had a knowledgeable, comforting, and enjoyable conversation with Larry Patten. Not by phone or email—I read his book. Reading Companion for the Hospice Journey was like having a heart-to-heart conversation about one of the scariest topics I know: dying.” - Barbara Karnes, Hospice RN, award-winning end-of-life educator. Author of Gone From My Sight (aka, “The Little Blue Book”)