If I Were the Hospice Nurse Knocking at Your Door
Two stories by Susie Bright and Denise Napoli Long
If I were the nurse opening up your hospice case, this is what I would say, and this is what I would do.
First of all, I come into your house at the time I say I’m going to come.
If I’m going to be early or late, I call first and make sure that’s okay.
Today’s essay is by hospice RN and writer, Denise Napoli Long. Afterword, by Susie.
I don’t ring the doorbell all gloom and doom. It’s not because I think this isn’t sad. It’s sad as hell. It’s because you don’t need yet another stranger coming at you to talk about your illness with a long face, acting miserable.
My patients and their families often call me bubbly, and they mean it as a compliment. Let me tell you, no one in my friend circle or among my family would call me bubbly.
But many times, no clinical person has been in a good mood around these patients in months or years. So I try to be.
Next, I ask if there’s anyone else who wants to be looped in. Sometimes the family will video-call a relative who isn’t around, or put them on speakerphone. That’s fine. I want as many voices in the room asking questions and getting answers as needed.
I do a quick assessment. I always start with the feet . . . the feet tell a lot. Are they swollen, cold, purple? Dry? Painful? Are they always like that? Have they gotten worse lately?
I do vitals, but I don’t make a big deal about writing them down or asking what’s normal for this patient. The vitals aren’t important. It’s how this patient feels.
I listen to their lungs, listen to their belly, listen to their heart. I feel their pulse with my hand.
Then I hear their story. Sometimes I’ll say, “So, what prompted this referral to hospice?
Maybe the patient was doing chemo but they can’t take it anymore. Maybe the patient was doing alright but had a fall, or a pneumonia, or a UTI, and landed in the hospital, and they don’t want to go through that again.
Maybe there’s been a slow decline and the patient no longer eats or drinks more than a few sips or bites a day, they sleep 18, 20 hours a day, they don’t want to see anyone, do anything.
Maybe their daughter or son schlepped them to the doctor because they don’t know what else to do and the doctor said, “It’s time for hospice.”
Then I say this, almost verbatim, every time:
“I’m going to give you my hospice spiel, and I’m going to be blunt. I hope that’s okay, and forgive me if I’m repeating stuff you already know.
“In order to come on hospice, your doctor signed something called a certificate of terminal illness, or a CTI.
“That means that, in their opinion, the patient has less than six months to live. This number is a complete guess. It’s pulled from thin air. No one knows. I have patients who live much longer than six months and some who live nowhere near that.
“They have to put a number on it so that Medicare will agree that this person is dying and pay for hospice.
“But that’s not what hospice is about.
“Hospice is about two things:
“The first is, my patients and their families do not want to go back to the hospital. They don’t want tests or scans or blood work or therapies. They don’t want to go to the ER again. They don’t want to be admitted for a work-up. They want to stay home, period, even if that means they’re going to die at home.
“Is that where you guys are at?”
(99% of my families and patients say, Yes, that’s right.)
“The second part of hospice is that your family needs help. They can’t handle this alone. They need someone to be able to call 24/7 that isn’t 911, and they need someone to come to the house to check on you, and they need aides to wash you up, and bring equipment, and medication, and supplies, and everything else. They need help.”
(99% of my families nod yes to this, too.)
“In hospice, I don’t care what your blood pressure is.
“I don’t care whether you take your cholesterol pill.
“I don’t care whether you eat a Big Mac for breakfast and wash it down with a bottle of bourbon.
“I only care about three things, in this order:
Are you comfortable?
Are you safe?
Is your family getting support?
“And that’s the truth. That’s what hospice is supposed to be about, at least as I understand it.”
If you’re scared to hear about hospice, I get it. But now you know, it’s not as scary as you think.
That’s the deal. That’s the spiel. Sometimes I even bring cookies.
Afterword
My First Home Hospice Visit — afterword from Susie
I became acquainted with hospice when my mother died, and my dad; they were both in outpatient facilities.
The first time I lived with home hospice care, it was for my ex, Honey Lee Cottrell. She died here at home with family, in 2015. Honey had late-stage pancreatic cancer, which is one of the cancers that eludes early detection. By the time you find it, you’re likely at Stage 4.
The first hospice nurse who came to visit us, Kim, was a lot like Nurse Denise. We knew our heroine had arrived, instantly. Her forthrightness, her devotion to Honey’s comfort, her ease in how to live well at the end— was a profoundly different experience of “healthcare.”
When she left that first afternoon, I said, “Wow. This is what life and death should be like.”
We stopped hurtling ourselves to appointments, filling out forms, waiting in ugly offices, dealing with mealy-mouthed prognoses, painful treatments, financial attacks, begging for pain relief, being handed off to multiple overtaxed strangers, frustration after frustration.
It all S T O P P E D.
We spent time, instead, gardening; she loved to be outside. We got a kitten, Lucky, who would sit on Honey’s shoulders and no one else’s.
People came to visit, from all over. Some wanted to be in bed with her, others wanted to make art. Honey said that if she had idea any what a babe magnet she’d become once she had cancer . . .
She was a photographer, that never stopped. We built sculptures in the front yard and took pictures. We cooked; she cooked, as long as she had appetite. She loved to cook for her family.
We went on little drives. The beach. The ocean knows what it’s all about.
Of course Honey smoked, and we laughed about it. Betty Dodson always said the best time to start smoking is late in life, or when you get a a terminal diagnosis. Do as Betty does.
Nurse Kim or one of her compatriots, came the house regularly— or whenever we’d call. Any time, day or night. Quiet, kind, competent. She had the best sense of humor. She’d seen it all.
It was scary at first to get a handle on the pain meds, knowing how to change things, how to manage the transitions. She gentled us into it.
Honey was not a person who liked to be told what to do— who does, really? What I realized: everyone has a degree of stoicism, until they don’t. You needn’t fear your loved one won’t reach their limit. Everyone has a limit. If their stubbornness or agency is more important than the pain to them, enjoy it while it lasts.
It reminded me of living with a newborn— just as you master one thing, the situation changes.
When you’re in hospice caregiving, you feel as if the last months or weeks will last forever. And then when it’s over, you look back and think, “But it was a twinkle of the eye.”
Nurse Kim asked our family, (the three main caretakers, Susie, Jon, Aretha) if we wanted a hospice social worker.
YES PLEASE.
She asked if we wanted to meet her all together.
NO!
Or alone.
YES!
I think we each met with the angelic social worker to blow off steam about the other two. ;-)
Alice the Social Worker was a lifeline; we each felt like if no one else understood us, Alice was our guardian. Talk about the art of being present.
There are hospice sayings— clichés, really, that inform one’s new world view. No heroic measures; that’s a favorite. I am appalled by the rescue industry now.
Another one was the ring theory1:
“If the crisis is happening to you, you’re in the center of the ring.
“If the crisis is not happening to you, you’re in one of the outer circles.”
This is great for nipping ego-confusion and well-meaning advice in the bud, not to mention tantrums. Are YOU dying? No? Then act accordingly. There’s always an outer circle you can turn to.
Yes, I stumbled my way through this. The ring rules are infallible.
The hospice moment of death, the end, is something I hadn’t imagined.
Many of us know what it’s like to get a fatal call from a hospital, or a first responder— to hear the machines beeping, coding out. Literally pulling out the plug. Or to find a dead friend who clearly died alone, in agony. It’s the worst.
This death wasn’t like that.
We learned from Kim how to observe the signs of “active dying.” She taught us. And she said, when the moment of death happened, we didn’t have to DO anything. At all.
No one had to be called, no emergency jump-up. A death is not an emergency! You can sit, and contemplate, and be there, for as long as you want. You can wash or prepare the body as you wish. You are present with them. And maybe you go to sleep after awhile, or have a meal, and see how you feel later, or the next day . . . You’ll be ready when you’re ready.
Well, we called the crematorium the next day.
The dignity in those last hours was something else. Honey’s loss was incalculable; it still is. But her death was not to be trifled with. The light in the room; I can still conjure it. When the three of us looked up, and realized something had happened, she’d taken her last breath, our eyes met simultaneously. And I couldn’t hear a sound.
Since Honey Lee’s death, my partner and I have been called ‘on duty’ as hospice and end-of-life companions. I have found the rhythm; I get it.
I joke about it, yes. I say, “The next time I get a cold, I’m calling hospice!” I’m calling hospice and Roz Chast.
I am so sick of how we treat sick people.
All healthcare should be at home, a warm home, and kind, and without pain or humiliation or fear. No more lying. It should feel like love, and respect. I don’t know why we got so far away from that. It was a wrong turn.
In Case You Missed It
In the crowded room of everyone I know who has recently died and is about to die
This morning I learned about a woman’s death, someone I knew in the strangest of ways.
Read the whole thing. Words to live by.
 | A guest post by
|
Btw, everyone, I made an “audio typo” in my podcast at top. A couple times I referred to “Denise Napoli” as “Donna”! And that is because I have an affectionate memory of Donna Jo Napoli, linguistics and children’s book author. No, they’re not related; I asked. My apologies.
Susie, I’m saving this one. Love.