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Monday, July 27, 2009

The Untouchables

My critically ill patient is back in the office. She is literally disintegrating before my eyes, her encephalopathy worse. Confused, hallucinating and delusional-- she is unable to speak. A week ago she was somewhat mobile. Now she is confined to a wheel chair resembling many unfortunate patients I have cared for in nursing homes with end stage Alzheimer's disease: this patient is 47 years old. Another doctor had cared for her for 7 months. She has been under my care for only one month. She needs hospitalization. I have sent other patients to many hospitals over a period of years with poor outcomes. This different University Hospital is reputed to be a bit more friendly. We shall see.

I send her to the hospital with a stack of studies and a hand written summary. She is sero-positive for both Lyme and Ehrlichia--thank God! I have written down the name of a neurologist who is reputed to be "Lyme friendly."

The only way to be admitted to hospitals these days is through the ER, unless you are an "attending" with direct admitting privileges. And even this occurs rarely these days.

The intern is the first to call me: "We don't see anything acutely wrong with patient"--not wanting to admit her to his service.

She is very ill, please admit her.

I am called back by a supercilious second year resident, his boss. "The patient has been the same for a month--there is nothing acute here--we don't want to admit her. The neurologist whose name you wrote down won't be able to see her unless you call him. You should not have sent the patient to the ER: you have given her the erroneous impression that she will be admitted. I don't see any reason for an admission."

"Please admit this patient. She is getting worse. She has a severe progressive encephalitis. She absolutely must be admitted for a work up; she needs a a lumbar puncture. You cannot send this patient home"-- I implore.

"Humf, I will get neurology to see her." The neurologist you have requested will not see her unless you arrange it--here is his beeper number."

I page the doctor: no response.

The gatekeeper--the man who would keep my critically ill patient from admission to the esteemed University Hospital is a "sagacious" 26 year old doctor with a major "...tude."

The patient is crazy of course, the doctor a wack-job. Tick borne disease causing encephalopathy--"whatever". Reluctantly: "I'll see what neurology has to say."

The untouchables: cursed-- damned-- invisible.
At least that how it seems.

Why take the blue pill if the red one works just as well?

Something about chasing a white rabbit down a hole I think.

"I'm sorry-- which pill do we take?"


Anonymous said...

Unfortunately this is the story for MANY lyme patients...when is anyone ever going to understand this?
Thank you for being such a GREAT doctor!

Gretchen P

Spinhirne said...

We hear the same stories over and over. Yet each and every one is important.

Where does this get fixed? And, if the 26-year-old intern gets on the phone with a 24-year-old occupational nurse working for an insurance company, dedicated 40-hours-a-week to denying benefits, a terrible situation will only become worse.

Yet, the six o-clock news is filled with members of Congress talking about how we have the best doctors and health care in the world so we have to be careful not to change anything.

Somewhere, there needs to be a room of doctors discussing cases, doing the right thing and using health resources wisely. Their actions are visible, but protected from sham review.

This is not going to happen when their is any influence exerted by an insurance company. Doctors and citizens cannot let this one case or a million others like it to continue.

This is not really a moral or ethical issue. It is just a question of not being stupid.

Joel Spinhirne

Lyme report: Montgomery County, MD said...

If it only were that simple

Unknown said...

And what if neither the red nor the blue pill work?

Well...naturally that's just psychosomatic. Period.

Anonymous said...

Similar experience, not quite near death but had numbness start in thighs and progress down to feet, went to the ER, told by resident

"If you just had told me the numbness started in your feet first I could admit you with Gillian Barre but since it started in your thighs I can find nothing wrong with you, you need to go home and follow up with your Primary"

How do we change this?

MJ said...

Not admitted to the ER ahhh?
How the Doctor "dare" to send her, ahhhhh???? There's no care for Lyme disease patients and no care for anyone else either!

So sorry for "our" very sick patient; praying for her and praying for her to receive the medical attention she needs... it's so unfair!
If it only were that simple... like love and compassion!

Unknown said...

May I clear something about the last post? It is not just the attention she, the very sick patient, "needs;' but the medical attention she DESERVES and the medical attention she has the RIGHT of receiving. This is not only unfair but I'm sure it's also illegal!

My God, she is the reflection of all of us; that is how we could be or how we can get if not treated and neglected, so, we are not admitted when most need it because it is not acute but a prolonged suffering?
Certainly no, not so simple!

Unknown said...

Orlando...unfortunately in this country we DO NOT have the right to healthcare! Emergency rooms (under the EMTALA legislation) are only required to treat patients who present needing emergent care. If they actually do need emergent care, they are only required to stabilize patients and then discharge them to a charity care facility.

And this is a patient who I presume has some sort of health insurance. Imagine if the patient were uninsured....

Unknown said...

We would be lost without you!!!!
Thank you for sharing your experiences and treating us and working so hard!!!

So, probably the wet mounts are a form of Bartonella now swimming freely in the blood?
Well, "better bad known that good unknown" ah? Those wet mounts have to be uncovered and treated aggressively!!

Waiting every week to read your next post! Like if it's my diary! ha!!
Thank you, God bless you and give you lots of strength to fight Lyme and politicians! LOL!

Waltham Dan said...

I've no idea whether this study is relevant to this patient, but I'll bet it's of interest to you. (Not yet published as a paper, it was a poster. You can get a write-up from the primary researcher).

"Diminished Epidermal Nerve Fiber Density in Patients with Antibodies to Outer Surface Protein A (OspA) of B. burgdorferi Improves with Intravenous Immunoglobulin Therapy"

Citations include a paper by Steere et al (IIRC) on the cross-reaction of Lyme OspA antibodies to nerve fiber.

What do you think?

MaWaSi said...

I am browsing your blogs. I commend you for treating and still finding time to blog. I think the clue here is that all primary care should have hospital privileges and keep hospital skills up to date. hospitalists have an endless supply of patients and soon forget their calling to medicine. They don't need to have a bedside manner, they care returf the hard cases and call them neuropysc and move on. Of course I paint with a broad based brush. If all were this way we would be bottom of the barrel instead of right in the mediocre bracket. I perceive there are few new graduates that would treat empirically or actually look at a wet smear (novel approach should be done in all offices) when large labs can tell you what you do and don't have. Long story short, become your own advocate, surround yourself with aggressive clinicians, use outcome assessments to justify treatment and don't get sick ;)