Sent Back: Imagining the Real Costs of a Family’s End-of-Life Decisions

Evelyn Simak/ via Wikimedia Commons

Evelyn Simak/ via Wikimedia Commons

Editor’s note: This is a work of fiction. The characters are invented; the situation explored may be all too common.*

Beep. Beep. Beep. There’s a slow, rhythmic sound next to my head. I’ve never heard a sound like it before. I hear a whoosh on the other side of me, and at the same time I feel pressure in my chest, like a balloon that on the verge of popping.

It only lasts a few seconds and the pressure is gone. My chest returns to normal and I immediately feel better. Something squeezes my left arm tight—so tight that I want to yell. But I can’t make any words come out.

Then, just as quick as the pressure in my chest came and left, so does the pinch around my arm. I don’t know where I am, but I feel like I’m being tortured.

“I know that it’s cold in here, but I’ll use this warm blanket to keep you warm,” says the strange voice, belonging to a person I can’t see.

Who are you, I try to ask. But just as the darkness around me persists, so does my inability to speak. I have no idea where I am, and I’m scared.

The voice comes back, “Ok, it’s time to roll on your side.” I feel someone tug on my left side and roll me onto my right. A new beeping starts: this one sounds angry, like something’s wrong. I want to ask but I can’t make the words come out. I feel what I think is water and a washcloth on my backside and I’m overcome with embarrassment.

Why is this stranger washing me? I feel the sensation of rubber being dragged across my left side as I hear a different voice say, “Hey, I’m dropping her here. Are you almost done?” There’s a little push on my back and the rubber stops tearing at my left side.

The next order of business is a flash of cold across my back.

“Sorry, dear, I know it’s cold but we need to keep your skin moisturized. There will be no bedsores on my watch.” The cold gives way to a nice back rub. For a moment I’m relaxed and not worrying about where I am.

I hear someone knocking on the door. Oh, please, I think to myself, two people seeing me like this is bad enough. I pray that the voices don’t let anyone else in.

“Just a minute,” the second voice says, “We’ll be done soon.” I try to say thank you, but the words won’t come out.

I feel myself being rolled back and forth and I think that something underneath me is being removed and replaced. I roll over lumps and cold wet areas. When they finally stop moving me, I find myself lying partially on my right side and a sharp pain shoots through my body.

I try to tell them but I can’t. I try to move but my body won’t listen. I feel pressure against the left side of my back and admit defeat. Even if my body would listen, there’s some sort of barrier to keep me right where I am.

I feel someone opening my mouth. There’s a sudden sensation of pure joy. I didn’t realize just how dry my mouth was until this very second. I want to drink Niagara Falls. I try to tell them but I can’t, so I just enjoy the wet swab on my tongue.

The swab of happiness is removed from my mouth and I want to cry. Please, I try to plead, bring that back. But I can’t get a word out.

The door opens and I hear voice number one says, “Ok, you can come in now.”

I hear shuffling footsteps, but no one says a word. Finally I hear a familiar voice say, “Oh, mom!”

A hand grabs mine and holds tight. “Mom, I’m so sorry,” I hear the voice of my daughter say.

There are a few sniffles before she says again, “I’m so sorry.” What are you sorry for, I want to ask. But I can’t.

“Jane, stop saying that. Why are you sorry?” says another familiar voice, this time my son’s. “We’re doing everything to keep mom alive.”

“I know that, Jake, but that’s not what she wants. You know that. We’re torturing her.” I hear my daughter’s voice break and I can picture her sitting next to me, crying.

They begin arguing, and I hear words like “die,” “quality of life,” and “last wishes.” I can’t concentrate on what they are saying, though, because the tip of my nose itches. The agony of my chest feeling like it’s going to burst every few seconds is nothing compared to this.

I try to lift my arm up but my body is in revolt. Maybe moving my arm is too ambitious, I think, so I try to wiggle my nose but nothing happens. My nose begins to itch so badly that I wonder if my daughter is tickling it with a feather.

Why would she torment me like this? I start to really try to fight my body and I hear new beeps, different than the smooth, rhythmic ones earlier. These sound loud and angry, like they are demanding immediate attention.

I hear people running into my room, then the sound of metal wheels on the floor. Voice number one says to my daughter, “She’s crashing! You need to move!” It sounds like a chair is dragged across the floor.

The voice says, “Someone hand me the pads!” I feel large, cold stickers placed on my chest and stomach. I feel a sharp pinch in my arm and a new voice says, “Got a new line. Hand me the saline.”

My brain starts to feel fuzzy and the itch on my nose and the pain on my side start to subside. I feel calm, like I’m floating. I can still hear the voices, only now they sound like they are in a tunnel, heading away from me.

A new voice says, “I’m Dr Smith. Are you her children?” They must nod, because I don’t hear an answer. The new voice continues, “As you can see, your mother isn’t doing well. I need to know what her wishes are.”

As I hear Jane and Jake argue I finally understand that I am in a hospital and that I’m dying. I try to smile, because I’m ready. I’ve been waiting 15 years to see my husband again. All my friends have died. I’m jealous that everyone is together without me—and now it’s finally my turn to join the party.

I want to tell Jane and Jake that I love them, but I can’t. I’ve told them every day since they were born that I love them and I take comfort in knowing that they know. The noise around me is no longer words and beeps, just static, and it’s the most beautiful noise I’ve ever heard. I’m almost home, honey, I think to myself.

My chest is on fire, like I’ve been burned at the stake. Every time that machine whooshes and expands my chest I want to scream in agony. My mouth feels so dry that sandpaper in my mouth would be an improvement. There’s something new in my throat; it feels like a small rubber tube. Every time the whooshing machine moves my chest, the tube in my throat gags me.

Death would never be this bad. I must still be alive but I don’t understand why. What did I do to deserve such torture? I was so close to my husband and my friends. Why was I sent back?

I heard a door open, then close. There is water running. Wheels squeak towards me. I feel warm water on my face and I want to say thank you, but I can’t. I hear voice number one begin talking quietly, “I’m so sorry. Your daughter tried to stop everything and let you have peace, but your son isn’t ready to let you go. We lost you, but he wanted you back. You’re going for a feeding tube today and you’ll most likely be transferred to long-term care tomorrow. I’m so sorry.”

She finishes washing my face and leaves the room. I try to tell her to stop, to come back, but I can’t. I want to tell her that I don’t want a feeding tube, that I just want to see my husband again. I’m ready to die. But I can’t.

The author of this post, Patricia Bath, BSN, RN, works as a nurse in Florida. She also writes a blog called Saves Lives Will Travel

* This post won a 2017 APEX (Association for Excellence in Publishing) grand award for best blog post in the social media category. It was also one of three posts on this blog that won the 2017 ASHPE (American Society of Healthcare Publication Editors) gold award for best blog post.

2017-07-28T10:06:11+00:00 July 12th, 2016|Nursing|4 Comments

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  1. Susan Froetschel July 19, 2016 at 11:54 am

    PLEASE CUT MY PREVIOUS comment and use this more coherent one?

    Thank you for this story that carries so much truth Family members must stay by their family’s side, do all they can to provide comfort and eliminate the confusion and do what they can to make compassionate decisions in line with the patient’s desires. There should be no debates in the room – only calm, kindness and quiet strength..

  2. Amanda Anderson July 14, 2016 at 9:15 am

    What a clear and real picture of being the patient in the bed. Thank you for writing this – we need to hear it much more often than we do; how our routine actions – meant for good and comfort – can actually be so painful and lasting.

  3. amygetter July 13, 2016 at 9:52 pm

    I just re-watched the movie “The Diving Bell and the Butterfly”, a stunning and true portrayal of what it is like to be “locked in” and have every one around you deciding what you need, while you must mutely accept. The nightmare of not having conversations about how much intervention you want as life wanes, what is really important to you, and how you hope to die, is that the fictional story above is REAL. It is happening on a daily basis, with families divided in bearing the decision burden because no one wanted to have the conversations before they are actually “needed”(hence waiting for the crisis to occur first). Unfortunately, many people outside the medical arena have no idea that advances in medicine will in fact prolong their death, or perhaps prolong a life they never hoped to live. Even with so much talk about end of life care, we are still doing some of it very badly. Start talking NOW. (This link is a great place to start:

  4. Didi Martin July 13, 2016 at 5:36 pm

    Having been a RN I identify with this story and as a sister who watched my triplet sister die recently from septic shock from chemo you put into words that I am struggling with. thanks

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