Sunday, January 29, 2017

"You May Have to Decide if You Want to Watch Her Bleed to Death" --ER Doc

In December, I got an early morning phone call from the nursing home, asking me to meet Mom at the Carle Emergency Room: she was vomiting blood.

I arrived at the ER just as the ambulance did, to find Mom agitated and clutching her abdomen—but not vomiting. She had no fever. She would not open her mouth for the doctor to check her throat. She had to be held down to put an IV in her arm, had diaper and bed clothes changed twice, and finally fell asleep. Shortly after they calmed her, the ER doctor finally came to me and asked:

"How aggressive do you want us to be in treating her?" 

When I asked them what their diagnosis was, they didn't have one, but wanted me to tell them how far to go to find out. "What do you want us to do?"

They were offering to not even investigate. Was that it? Because then what? You send her back to the nursing home that sent her here? Am I supposed to make some suggestions? How about some antibiotics, will that work? Should we test her urine? Why am I here?

A second GI doctor explained to me that a scope would be one test they could perform to diagnose, but the suggestion came with disclaimers--Anesthesia. A scope. Invasive. And she asked me the same question:
How aggressive do you want us to be?

Well. A scope sounds like a good idea, doesn't it? How invasive it? It's just a scope, isn't it? No cutting or anything? Any kind of diagnosis at all would be a really nice starting point for me, if no one is going to help me out here.

Oh, I got the underlying message all right: Ehhh...this isn't really a life worth saving. Because no one, ever, in any emergency room I've ever been has asked me whether I'd like to skip the stitches or the scope or x-ray.

The first ER doc returned, and, trying not to cry, I made what I felt to be a sincere appeal: "A proper medical decision is outside of my wheelhouse. I understand there is little quality of life for my mother, and I'm not interested in extending it for no reason. I just want to be kind and keep her out of pain. I need some guidance." I write that like I was so strong and stoic, but believe me: I was shaky and squeaking.

 He paused for a long moment, and then breathed,

"You may have to decide if you want to watch her bleed to death." 

So much for not crying—I can still feel the wind go out of me. That's the doctor's advice, based on my question?  Can you toss another option at me? Watching her bleed to death may be the kind option, based on your professional medical opinion?

And then, trying to get a grip. Deep breath. Well. Asked and answered. Maybe I should wrap my head around this. Maybe I should prepare myself  to watch her bleed to death, because if that's what it's going to be, I'm sure as hell not going to make her do it alone. When?! This afternoon? Will they leave me in a room with her? Will she vomit all of the blood until she dies? Will it come out of her ears and eyes and nose and anus? Will her blood run off a table or a bed and get all over me?


I was horrified and crying and sick to my stomach as they admitted Mom to the hospital, and I followed them up to the room to face yet another doctor asking what I wanted them to do. In the end, I opted to have her scoped.* The "invasive" scope took 30 minutes and revealed that there was no internal bleeding, no ulcers in her esophagus, nothing at all that would explain vomiting blood.

She stayed in the hospital a few more days, where--in comparison to the other hospital in town that Clint's mother goes to frequently--I felt to be, along with my mother, an enormous annoyance.

They were busy, had nothing to report, sure they could call me--what was my number again? A friend sat with me while I waited an hour across from the nurse's station for an update. I finally approached the nurse, where I could see her sitting for the last 15 minutes--and she could clearly see me, but I had been told to wait--and she sighed, "Do you want me in there?" Not "how can I help you?" or "I'll bet you'd like an update!"

I showed up at one point to find the door to Mom's room (and only Mom's room) closed. I'm sure there was a good reason for that, but it didn't comfort me. It felt like they wanted to silence her, when I wanted them to keep an eye on her--she can't use a call button, if she falls out of bed. She does not have words to call for help.

By comparison, when we take Clint's mother to the other hospital in this town, the first thing they do is ask us to take a marker and write our names and phone numbers on the white board in her room. They greet us by name, give us updates, and call Clint at work if he can't get in to see her.

I wanted a little bit of that, regardless of my mother's mental state. I wanted someone to say "I'm sorry, the blood work hasn't come back yet," or "she slept through the night," or a "Honey, we're doing all we can. We have your number and we will call the minute we find out."

This is not sour grapes. I am not a sensitive person that is constantly, as my son says, "butt-hurt" over every infraction. I don't feel entitled to much, and I don't imagine conflict where conflict does not exist. I realize that I wasn't the patient in that situation, and that the staff didn't really owe me jack, if they were taking sufficient care of my mother. I was constantly patient and polite, even when I felt distressed. A nurse in one station argued with me that my mother used a wheelchair. When I told her that my mother had never used a wheelchair, and walks to lunch every day, she corrected me. "No she doesn't." Ma'am. My. Mother. Walks. I'm not making this up. I walk with her. She feeds herself.

But in the end, that's all I had in her defense: She walks and she feeds herself, and I ended up feeling somehow shamed and pathetic that I expected that to be enough to warrant a bit more dignity.

There was more to that day. I was told I could stay in the recovery room for Mom's procedure to calm her, then scolded and kicked out to the waiting room, then dragged back by the first nurse. Twice.

I know there's protocol, and you have to wait somewhere, and I know there was miscommunication, but in the midst of preparing myself to watch  my mother bleed to death---it was just one more conflict that I found myself in the middle of, wondering "what in the hell is happening?"


My mother was sent home after 2 nights in the hospital. She was, I found out from nursing home staff, finally, diagnosed to have had pneumonia and a urinary tract infection.

In the end, after this day, I've become very, very clear about what I want, for my mother and for myself.

I am still dumbstruck that a doctor that told me to consider watching my mother bleed to death never said "we'll keep her comfortable," or "would you like to talk to a social worker?" or "perhaps you should call hospice" or any number of other potential avenues that it has to be clear that we--my mother and I--needed.

Dumbstruck and Furious.

And we will not do this again.


*I am circling back to amend this post and acknowledge that there was one wonderful male nurse (Tim--was his name Tim?) that helped me sort things out to help make my decisions. He was sweet to Mom, calling her hon, and saying comforting things to her as he helped her out. He told me a joke about a duck asking the pharmacist just to put the chapstick on his bill. He made me feel, at the end of that crazy first day, that she was in good hands, and that I could get home and get some rest.