Hospitalists suck for patients with chronic/rare conditions (rant) [View all]

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.