BRMC has wanted to put Teresa in hospice since she was admitted last November. Doctors suggested to skip the ureteral stents and have “an easy death”. Teresa has refused every suggestion to be on hospice. Hospice sounds nice — if you’re really at that point — until you read more about it in general. It’s a profitable industry.
No matter what has been going on, Teresa has steadfastly maintained that she is (1) not ready to die, (2) not ready to go anywhere (as in, death), (3) does not want to be on hospice.
But the hospital is sure that we’re all being ridiculous and in denial. We all know how serious her situation is, but we want her to have every chance — as long as she wants to have those chances.
The hospital already started edging Teresa onto hospice care without our permission, and started taking away monitors (like monitoring her oxygen levels!). I think we got that all reversed, but I don’t trust them not to do it again. They’ve unhooked her oxygen (cannula out of nose, unplugged pulse oximeter) to clean her — and not hooked her back up. They frequently hook her oxygen cannula, and/or her PCA pump button over her IV pole, and then don’t give either back to her.
I realize that each nurse on the floor she has been on for awhile has 11 patients each, and they work 12 hours shifts, and that Teresa needs a LOT of attention most of the day because of her various health problems, but forgetting to give a patient their PCA button back? Forgetting to give a patient who almost had to be ventilated, who has a partially collapsed lung, and a pleural effusion the floor doctors are afraid to let her have drained, back their oxygen? Once, maybe, but over and over?
And then they’ve all taken turns talking to us about why we’re “letting her suffer”. “Palliative” care keeps coming by (and then billing insurance for nearly $400!) to try to coerce her into hospice. Over. And Over. Telling them to stop coming by doesn’t do any good. And more than one has actually said to several of us that we’re “crazy”.
Teresa, even before she got sick, could be very passive. She will agree to something if she doesn’t want to listen to you any more. Unfortunately if they catch her in a non-lucid moment (more common in late afternoon and night), she has a good chance of having no idea what they’re saying, and won’t remember agreeing to it even minutes later. And this is really dangerous — and inappropriate of the hospital to be doing.
I also can’t trust them (because I’ve seen it happen) not to start lowering her bed down flat without pausing her feeding tube – or making sure she didn’t just eat something orally. If she lays down flat (or mostly) in these circumstances, she is at high risk for vomiting. Which could easily be followed by aspiration (and aspiration pneumonia) and/or a ventilator. Dr. M thinks if she goes on a ventilator, she will never come off — and she would be sedated and unaware while on it. Not cool.
The hospital caused her to have bed sores, and then waited weeks and weeks to do any real treatment of them. If they’d done right by her in the first place, she probably wouldn’t have them. If they’d at least treated them right away, they might not mostly be stage 4. And at least one, maybe two, of them have tunneling — i.e. basically, the wounds are MUCH deeper than they look.
They’ve starved her for awhile (NPO) and more than once; a patient with cachexia (involuntary anorexia)! When they finally hooked her tube back up to a bag (the wrong kind at first), they started her slow – which is logical – but they’ve never increased it. She’s only been getting 480 calories PER DAY for over a week now. Unsurprisingly, she is getting thinner and thinner. She is cleared for soups, and can manage some soft foods (applesauce, pudding, baby food) but doesn’t have strength for things that require a lot of chewing.
At one point, all they gave her was IV dextrose. Surprise, the tumors grew a little more!
Her feeding tube is in her upper stomach. Apparently the dobhoff tube usually goes into the intestine, but because of the tumor, even with guided fluoroscopy, they couldn’t get it down there. But the ICU nurses a few weeks ago didn’t bother to check her records, and started giving her meds, including potassium (which you’re supposed to take with food to protect your stomach) because they were sure the tube was bypassing the stomach.
The more experienced nurse DID at least admit to not checking Teresa’s records or the x-ray before administering meds through the tube, but damage done. And then various nurses continued to administer meds on an empty stomach through the tube. That first night or the next is when she threw/coughed up nearly 500cc’s of blood. I had to nag them into doing an emergency CT (without contrast) to see if they could find the source of the bleed. They weren’t going to bother!
The first vomiting, I sincerely believe, was induced by the hospital too, not the feeding tube amount. She was doing fine on 1900 calories a day, and some oral foods, until they gave her Mucinex without water. You take water with it, plus more after, to help thin out the mucus, so if you cough it up, you can cough it OUT without coughing until you vomit. They didn’t give her liquids to thin it out. And she told them the Mucinex was nauseating and she didn’t like it and they gave her at least 1-2 more doses.
They were going to give her a CT w/o pre-medicating her on the 5th floor, and the doctor acted like I was being ridiculous because Teresa hadn’t mentioned it to her. (It hadn’t transferred with her records because the 5th/Specialty floor has NO DIGITAL RECORDS, and if they send patients down to Ballad, Ballad sends all the paper records to Medical Records, apparently without reviewing it!) Never mind that they had Teresa full of morphine, a pain medicine that made her extra groggy and dried her out horribly. And they refused to give her any alternatives. Of course she didn’t remember she had to be pre-medicated! (Also, her oncologist wasn’t allowed to be part of her care team while Teresa was on the specialty floor.)
On her current floor, they gave her oxy as a breakthrough med with her dilaudid, which she’s done before. But this time they mixed in Ativan. Not a good mix. And when I was most recently called down because they told me she was out of it, hard to wake up, not breathing well, and that I needed to come down for THE TALK? Yeah, guess what precipitated all those behaviors for her? Opioids plus Ativan. More than once.
Sorry some of this is out of order, but it just goes on and on and on.
Basically? They’re out of ideas, so it is time for hospice in their eyes.
We’re going to try to transfer her up to Roanoke, probably to Carilion, if they’ll accept her. Their info about wound care looks a lot more promising than what she’s had so far at BRMC.
Some links for you:
As more hospices enroll patients who aren’t dying, questions about lethal doses arise
Why Hospice Organizations Don’t Want You To Know the Truth
Why Opioids Make Pain Worse*
*I’m not against opioids. And I know the way the crackdown on them is going, is making lives miserable for many people who are truly in pain — to the point many have committed suicide, seeing no other way out.
And they’ve been very helpful for T, for which I’m grateful. But if you have back pain because no one has let you get out of bed during your ENTIRE hospital stay, and you’ve been in essentially the same position that entire time? How about a gentle back massage instead of increasing the amount of pain medicine? Instead of giving a shot of the opioid on top of the PCA (which is continuous plus the self-administered option)? My Mom rubbing Teresa’s back eased that kind of pain, but the dilaudid never did. But it did make her extra groggy, less able to eat, less able to communicate…. AND….less able to page the nurses for help. (And they encourage her all the time — the entire time, not just recently, to push the PCA button; even if the reason she paged them was for ice chips to suck and she says she’d not having pain; they’d push her to use it until she did.
I very much think opioids can be very useful, but if there are other ways to treat pain — especially ways which will be more beneficial to the patient longterm? Try them first. Don’t drug them into oblivion and called it “comfort care”.
I am sorry you are having such a hard time with the nurses. I can totally understand. My mother-in-law was in “comfort care”. She was to be transferred to hospice at home the following day. She was given morphine and ativan every hour and hour and a half. I don’t remember her morphine dosage, but her ativan was double what my prescription is, and she weighed less. She only woke once more the day they started the medication at that dosage and frequency. We had questioned her husband’s ability to administer the medication at home. Then during the night, she aspirated and passed. I question it, but honestly, it was for the best.
I know T is giving it everything she can, as well as you and her other caregivers. I hope you find the needed solutions. Sending you my love and extra strength.
Just a question, I hope you don’t mind. Because of the risk of her agreeing to something that she really does not want due to being “out of it” from the meds she has to take, is there a way that you could be appointed to be the legal one to make decisions, maybe by her? So that they have to run everything past you before they do it? Not like a POA…well, I don’t know much about them, so maybe like that…but something? Since they appear to be a bit…sneaky…and she is heavily medicated by necessity, I wouldn’t trust them either honestly. You guys have the right to control her medical choices and she is lucky to have the support she has. Hope you can get her moved.
I am her POA (and she’s mine). After she got diagnosed, we got living wills, advanced medical directives, and POAs drawn up just in case. And the hospital has all the forms on file.
But they consider her 100% competent all the time, even when she’s hallucinating, so they said I have no say. It’s like talking to a brick wall.
Are you keeping any record of what’s happening? If it were me, I’d start finding an attorney.
As best as I can. It’s really hard because communication is so poor on their end. It isn’t a bad idea, and I’d thought of the media too — though more for trying to find a surgeon, or team of surgeons, willing to give her a chance.
She’s getting another bed sore, this one on her shoulder. Mom said she pointed it out to several people. If tonight’s nurse, who we like, does something for this new one, she’ll be the first. The other people Mom told were pretty much like, “meh”. 🙁