It’s nearly impossible to hear and retain information about hospice care when a loved one enters the final stages of life. Whether a years-long struggle with heart disease or a cancer diagnosis and weeks to live, most have never considered hospice’s options and limits.
Of course, they haven’t! But then:
With honest conversations and tenderness, a family decides hospice is the best choice.
Or . . .
Staggered by panic and desperate to get a loved one out of the hospital, hospice seems like the awful but only possibility.
Or . . .
In denial until doctors say there is “nothing more to do,” a family continues to not talk about 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 a foreign language. 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. Not too long 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. She silences her cell phone while teaching so I wasn’t surprised she didn’t answer texts. While confident she’d gone to one of Fresno Unified School District’s elementary schools, they have 70 different elementary 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. And then she safely 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 listened to 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 . . . or maybe 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 . . . but only what we want to hear.
How, with our frantic urgency, can we understand what hospice really does?
Let me suggest several facts about hospice that are important to know from the get-go. I chose these because I frequently hear variations of them in concerns about hospice.
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, and hospices with “in patient” beds, most remain in their private residence. According to 2018* 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 current pandemic and its restrictions continue to cause changes to visit frequency . . . so ask your hospice what that means for you. But please remember: it will be the family and friends (and often privately hired caregivers) that 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 restrictions, 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, and the world’s most popular “white lie” can mean a patient hides their level of pain and a nurse 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 “one 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 several 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 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 this webpage 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 overwhelm you every day.
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.
Questions are always better than silence or assumptions.
* 2018 statistics from the National Hospice and Palliative Care Organization (NHPCO) are HERE. (Recently, hospice care at home has decreased while care for patients in facilities has increased.)
**Are there mistakes with medication? Yes. Everyone involved—hospice staff, caregivers, family, and patient—are human. 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.
(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.)by