Hospitalists suck for patients with chronic/rare conditions (rant)

[Ms. Toad]

Hanging out in the hospital with my daughter for her first major flare with IBD (she's been living with it for nearly 30 years - a remarkable run). She also has PSC - a rare companion disease - 30,000 people in the US have it. Not to mention that increasingly IBD + PSC is considered a different disease from IBD (so even rarer, since not all people with PSC have IBD).

All this is to say that the number of doctors competent to care for anything related to her disease is vanishingly small.

She went to the ER yesterday with abdominal pain and was admitted overnight.

First, someone on the hospitalists' team told her she had appendicitis, and would almost certainly need her appendix removed, but that call would be up to the surgeon.

Next, a general surgeon pops in and information her that she should consider having her colon removed. (He repeated that suggestion today). She likely will need her colon removed someday - but she had a colonoscopy a bit over a month ago with no dysplasia or cancer. It showed evidence of disease, and because of that she switched to a new medicine which should show results within the month. The surgeon said no go on the appendectomy. No apology for assuming with apparently no basis (other than a CT scan showing inflammation) that her non-cancerous colon needed to be yanked on the basis of a single episode in nearly 30 years (and for later implying her GI specialist was incompetent for not having expressly discussed with her that she was close to losing her colon (she's not, based on conversations with her doctor)).

Immediately after that exchange, the hospitalist ordered IV NSAIDs for pain - without consulting the GI Team. Oral NSAIDS are almost universally frowned on by GI docs for their IBD patients. The IV version of this particular drug is responsible for several reported perforated colons/GI ulcers. (When we asked the hospitalist team assured us that problem was not associated with the IV version. The hospitalist also ordered steroids without consulting either the local GI team or my daughter's specialist. (The use of steroids is a long-standing discussion with her specialist - and is a last resort - never started without informed consent because of an earlier bad experience).

The local GI team was finally looped in this morning (or early afternoon). They were NOT happy about the NSAIDs on a gut that was already so inflamed it made an appendectomy inadvisable. They agreed to consult with my daughter's GI doc.

Then we heard back directly from my daughter's doc, who wanted her transferred to the main campus (and who also doesn't believe what is going on is colitis) . . . The transfer was vetoed by the hospitalist. As near as I can tell, neither the GI doc, nor the hospitalist, ever reached out to the person who has been managing her complex, rare disease for at least a decade. And since the local hospital has to initiate the transfer, she has no power too for anything.

So proud of my daughter. She got the hospitalist on the phone informed the hospitalist that it was really irrelevant why she wanted to transfer. Her doctor wanted the transfer, and so did she. Within 30 minutes we were told a transfer was being initiated - and shortly after that that it was accepted. Now we're just waiting for a bed to open up.

But - a hospitalist should never be the primary decision-maker when hospitalization arises out of a rare, chronic disease. That ball should have been passed, at a minimum, to a specialist in that field who is actively consulting with the long-term caregiver.

Next time, we'll just drive the hour to main campus. Pretty much done with the local branch.

And, as I was writing this, another surprise hit. We had an express discussion with the GI doc today about ordering pain meds, just in case. Because she is only a consultant to the hospitalist, she can't actually order them . . . She has to get the hospitalist to order them. They didn't. Well, "just in case" has arrived. The only option for pain is the NSAID . . . and morphine, which she is trying to avoid.

Argh.

[Joinfortmill]

1. Prayers for your daughter. Hospitals & hospitalists can

be dangerous places these days.

[Ms. Toad]

2. We have a long-standing family policy

That no one who isn't competent to defend themself stays in the hospital alone (On pain meds, too I'll, mentally out of it, etc.). I spent a month in the hospital when I was way too healthy to be hospitalized (I had to be on medication administered continuously by IV, but was otherwise healthy). It was scary then (in the 80s).

So far no one has tried to kick me out this time. I'm glad we didn't have to test that during the extreme COVID restrictions

I had my first significant run-in with hospitalists when I was diagnosed with pancreatitis after COVID. I hadn't articulated it them - but he didn't want to call in a GI consultant, since he was sure I was just a lying boozer. Until this bout, I hadn't put my finger on the problem - other than his attitude. It was that he was a generalist who was allowed to be the gatekeeper for my care, even though it was clearly a GI issue.

[yonder]

3. Best wishes for your daughter and good luck navigating the system.

[Ms. Toad]

5. Thanks.

We're still here (at the wrong hospital). Read the GI team the riot act about not consulting my daughter's regular GI.

She may need a transfusion this morning, along with more potassium. Or it may just be incompetence in drawing the sample through the IV line. Well see after a fresh stick.

[Silent Type]

4. Hope your daughter gets well soon. That's today's medicine. Don't think

it’ll get better. There are no Marcus Welbys or Dr Houses nowadays who look deeply into a case.

[Ms. Toad]

6. We actually have several Marcus Welby types on her team.

Unfortunately, this system relegates then to the role of consultant to the consultant.

[shrike3]

7. A recent trip to the ER (for husband) led me to the same conclusions.

He has several serious, and chronic, conditions which require monitoring. We had doctors thrown at us who knew nothing about his (very complicated) health history. Though his primary insisted she was monitoring from afar, it didn't feel like it. Luckily, we had our kidney doctor involved. He was at the hospital every day, and since he is highly respected, they listened to him in the end.

Our interaction with the surgeon was quite bizarre, IMO. He declined to operate (gall bladder), and while I was fine with that opinion, he kept stopping by my husband's room and telling him, in effect, "Don't believe what anybody tells you. I'm right." A friend suggested maybe it was a Medicare thing: the longer he stayed involved the more money he made. The surgeons I've dealt with in the past were far too busy to come to patients' room, particularly when they weren't really patients. Weird.

My sympathies. Hospitals are the eighth circle of hell these days.

[Ms. Toad]

8. The hospitalist system includes surgical consults if there is a possibility they might be needed.

Two teams of surgeons visited my daughter - general and colorectal - for all three hospitalizations. The tasks rotate - so they have a team assigned to visit all folks potentially needing surgery (whether they have any personal connection to them or not). All the surgeons in the hospital take a turn on the rounding team, so they only have to go around and interact with patients once every few weeks (which - in theory - solves the "too busy to come to patients' rooms" issue.)

I guess I should update this.

She was ultimately transferred to the hospital where all of her specialists practice - and her specialists were finally able to convince the generalist, the IBD specialist, and the two surgical teams that when my daughter has an inflamed colon she does not experience pain. Not ever in 30 ears. And that if my daughter says she is in pain, she is really in pain and they need to take it seriously. It was still a struggle, and her doctors - even in the hospital they practice in - had to be careful to avoid stepping on the toes of the specialists teams. Her pain came back, big time, along with signs of a raging infection. Massive doses of IV antibiotics worked to calm down her appendix.

And then, less than two weeks later, she had an actual flare - in my opinion - triggered by the IV NSAIDS they gave her. Worse symptoms than she has had since she was 4 - but still no pain. (Research based on giving people with IBD the specific IV NSAIDS they gave her established that somewhere around 20% experienced a flare in 9 days.)

And we went through the same nonsense again. They couldn't get her food allergies straight - and kept sending things that actually cause flares. She was very clear with them that she would be unwilling to take new meds without a prior consultation with her doctors. And, specifically, she wanted to avoid steroids if at all possible. They repeatedly ordered steroids for her - without consultation. And then got pissy with her when she refused them. And, ultimately, the message they took away was, "no steroids," rather than "no new meds without prior consultation."

So when they finally arrived on a non-steroid based treatment, they sent her two new meds to accompany the treatment without warning her about them. After she refused them (risking a 24-hour delay in the treatment she had agreed to), we did some quick research and learned that there was absolutely no evidence to require the secondary drugs - and the secondary drugs were correlated with the very thing they were being used to prevent. The nurse got all pissy and told us to stop googling things, and that the esteemed hospital had its own studies that said they worked, she might die if she refused them, etc. When the GI doctor finally showed up for a consult, it turned out that she agreed with the research we found (no basis for using the secondary meds), and that the pharmacy had added them to the order. It had contacted her - and she decided they were innocuous enough she didn't want to fight the pharmacy protocol - because the message she heard was "no steroids," not "consult before new meds."

Ultimately, the non-steroid treatment worked - but after she was released from the hospital, she developed thrombophlebitis and cellulitis around hte IV site. Had to go on antibiotics - which cause symptoms identical to a flare.

We think we're done with it and she's mostly recovered - but it shouldn't require a a mother to spend more than two weeks sleeping in a recliner in the hospital next to her 33 year old child to help her child fight off doctors who should never be in a position of managing care for a complex chronic condition.

I'm sorry you're going through it too.

[shrike3]

9. This fellow had already declined to operate on my husband.

Yet continued to visit him regularly, and from what I can tell spent most of his time crowing about how he was right and the others were wrong.

Our regular doctor said he was a terrific surgeon, but not much of a person.

[Ms. Toad]

10. They continue to visit.

Same thing happened with my daughter, except the crowing, through the three separate stays in two hospitals. The two surgical teams kept showing up every day, sometimes twice a day, to tell her they still thought it was a flare and that she should be working with a surgical team, but they weren't going to operate on her now. It's okay if the crazy hospitalist system.

[shrike3]

11. Seems like a waste of time to repeatedly visit and tell someone they DON'T need surgery.

But hospitalist systems are at both our local hospitals, and we'll just have to get used to it.

[Akoto]

12. Chronically ill, best phrase I know for these situations: "I'm leaving against medical advice."

[Ms. Toad]

13. That works, unless you need hospital care

(as has been the case each time we have encountered it recently).

All of the hospitalizations were for life-threatening conditions. Our personal doctors have our full trust and could easily care for us in a hospital setting - but they are not permitted to do so because of the hospitalist system. Unfortunately, the treatments needed could not have been administered in an out-patient basis.

So to get something close to the care we needed, we were forced to work with a broken system. It was the best of two unacceptable alternatives.

[Ziggysmom]

14. The last time my husband was hospitalized, he had fallen and broke his left hip. He has a ton

of problems including COPD, seizures, pulmonary hypertension, lumbar fusions.......
We were pleasantly surprised by the Hospitalist assigned to his care. He was from France and had married an American doctor. I believe it was his medical education in France which taught him to look at the whole person. He also routinely had little meetings with us and the nurses (All the nurses loved working with him).

Our capitalist economy has created the broken system of death care we suffer with today.

[Ms. Toad]

15. You were lucky.

In addition to my daughter's issues with hospitalists, I was hospitalized with pancreatitis that turned out to have been caused by COVID.

He went through the objective things which cause pancreatitis and found nothing that would have triggered it (gall stones, certain medical procedures or medicines), and finding none, he reverted to his prejudice that pancreatitis is alcohol-induced - and I must just be lying about it. He repeatedly, in front of any visitors who happened to be present, told me I just needed to go home and stop drinking. I'm not a tee-totaler, but I don't drink the quantities or for the duration which trigger pancreatitis. So I bullied him into a gastric consult. (Possible since I have traditional Medicare and don't have to jump through lots of hoops to approve a consult) They ran lots of tests and diagnosed two additional conditions. After I was released and was able to consult a pancreatic specialist, he confirmed what I suspected all along - it (and the other conditions, plus a third which wasn't diagnosed in the hospital) were caused by COVID.

And it's not like the connection was unknown at the time, or that I hadn't given the doctor a full history - which included a recent bout with COVID.