[Info] Quality of Life

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epileric

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I think this doc makes a good point. I think more doctors (neurologists specifically) are starting to consider this point.

Why is it easier to talk about quality of life with patients who are dying? Why don’t we factor these considerations into the decision-making for patients with conditions that aren’t fatal?

The presence of a terminal illness serves to focus everyone’s attentions. Widespread cancer metastases? Concerns about tight blood glucose control fade away. End-stage liver disease? Blood pressure control doesn’t matter so much any more. Bony pain from prostate cancer? Narcotic and sleeping pill addiction doesn’t even occur to anyone. I find it far more problematic to deal with patients with debilitating but non-fatal conditions when treatment options are perceived as limited because of co-existing diseases that produce so-called contraindications to certain medications.

I have a patient in his mid-70s with severe pain from osteoarthritis. Several fractures and a couple of unsuccessful joint replacement surgeries haven’t helped matters. Several years ago he found that a little drug called Vioxx worked extremely well for him, reducing his pain considerably and allowing him to do pretty much watever he wanted. As we all know, however, that drug was pulled from the market because of an unacceptable increased risk of heart attacks and other untoward cardiovascular events. Interestingly, one other drug (Celebrex) from the same medication class (COX2 inhibitors) remains on the market. However because of this gentleman’s diabetes, high blood pressure, high cholesterol (all treated to acceptable guidelines, as it happens) and age, all the red flagged warnings about increased cardiovascular risks go off if I were to try prescribing it for him.

Actually, most other doctors would probably make the unilateral determination that the risk from this medication class outweighs any potential benefit, and would therefore not even broach the topic with the patient. I disagree (surprise, surprise!) Here’s why:

“Risk” is an abstract concept. Having a risk factor for a disease or condition is not the same thing as having it, or even a modified or mild version of the condition. Right up until the moment the brain of an un-helmeted motorcyclist splatters across the pavement, he’s feeling just fine. This is also why diabetic hypertensive smokers with cholesterols of 300 walk around obliviously content to continue stuffing their faces with Big Macs. Discomfort with risk is purely emotional, and is a function of one’s perception of the risk. This is why doctors can seem more uncomfortable than patients about certain courses of medical treatment. We know more about what can go wrong, so there are times that we really fear for our patients, for whom ignorance can be quite blissful. It’s like when little kids barge into a busy street, only to have their mothers freak out as they haul them back. The kid has no idea why Mom’s so upset; he’s just fine.

In this case, though, we have a patient for whom a particular medication holds a real chance for significant improvement in quality of life despite a known, documented increased risk of an adverse cardiovascular event. Why don’t we factor quality of life considerations into the decision-making for patients who aren’t dying? The RISK of a heart attack is not the same as a heart attack. Whose comfort level with risk is more important here, the doctor’s or the patient’s?

I explained all this as best I could to the patient, providing him with various educational materials and information online as well as handouts from my office. I also included prescribing information for Celebrex, complete with all the warnings. Obviously a significant risk issue is medicolegal on my part. But I’ve known this guy long enough, and I plan to explain (and document) out my ass to make sure he understands the trade-offs here. Bottom line is that I offered him a prescription if he wants it. (By the way, he’s currently taking OTC naproxen for his pain, a drug with exactly the same cardiovascular risk profile, but not nearly as much bad press as the COX2 inhibitors.)

What happens if (hopefully when) I try actually writing the prescription, though? First, his pharmacy benefits manager will likely require prior authorization. (Why can’t he use cheaper meds? Because they don’t work well enough.) Second, a pharmacist will probably call and tell me that the drug is contraindicated in the elderly because of increased cardiovascular risk. True. But what we have here is a case where guidelines conspire to keep someone miserable. Shouldn’t the patient be the one to decide if he wants to live ten more years as a crippled invalid, or risk maybe five more while living his life the way he wants?

Take home message: Here in the trenches of primary care, “quality of life” doesn’t apply just at the end of life. It’s something we have to help our patients consider every day.

Quality of Life


I only wish more neurologists considered life quality when dealing with meds. I've been lucky recently but I have seen neurologists either overlook quality of life or equate it with stopping seizures. As we know neither is accurate.
 
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That guy said it. I agree.

I'm lucky. My current neurologists do consider quality of life when they make decisions/recommendations. Especially my epi. He considered adding a second drug, but after we talked it over his feeling was that I was suffering from enough side effects from the lamictal and other drugs that I'm on. They make me miserable on a daily basis. Balanced with the fact that adding a second AED couldn't absolutely ensure no breakthrough seizures, on the whole I'm better off minimizing meds and just dealing with the few breakthrough seizures when they come along. So no second drug. Thank you, doc!
 
I've been thinking about this lately. I've been having real problems with Tegretol since I started it with regards to side effects, but on the othe hand I haven't had a tonic clonic since October. As far as my neurologist is concerned he would probably consider it all win-win, but meanwhile I have to put up with aching legs, somnolence, hair breaking/falling out, excessive weight gain to name a few with no end of it in sight. And I'm still having partials. I've tried a few meds already, so i cant see him changing it if I'm still tc free by the next time I go see him.

Oh yeah, I was on Vioxx (Rofecoxib) mentioned in the above article too, for pain in my wrist when I was a young teen. Was gutted when they pulled it off the market - was the only thing that seemed to work right lol. They replaced it with another type of painkiller which was also pulled for being unsafe. Can't help but think the docs are trying to kill me off lol :p
 
i wish my doc. was the same way we might have 2 different types of epilepsy though.im on 5 aed's don't like it
 
that article could have been written by my rheumatologist (I have severe RA). I used to work for him before I got RA, so he's pretty open with me - when I asked him about the Vioxx think he was sooooooo angry - he had a lot of patients for whom Vioxx so improved their quality of life that the slightly elevated risk of cardiovascular problems was a non-issue...better to have 2 good, mobile years than 5 years of pain and immobility.

so often quality of life is ignored by fears of malpractice, puritan ethics, and calvinist attitudes toward the moral superiority of suffering...
 
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