Monday, March 19, 2007

Life is Full of Risks


The next time you step into your car, stop and think for a moment about the risks. The following things might happen. You could have a fender bender or bump into an inanimate object, causing damage to your car, someone else's car, or some one's property. It will be expensive to repair, your car insurance rates might rise and if it happens repeatedly you may become uninsurable. You could have an accident in which you are injured--perhaps with broken bones that will take months to heal, internal bleeding which may require emergency surgery and cause organ damage, or anatomically unnoticeably muscle or nerve injuries which could cause you years of chronic pain and disability. You could have injuries which leave you scarred and disfigured, you could become paralyzed and never walk again, never have use of your arms, require a respirator to breathe. You could die. And even if you're a very safe driver, there is no guarantee that someone else on the road isn't intoxicated or simply careless. And maybe you're not a great driver, and in a moment's distraction while you fiddle with the radio or respond to a child's request, you are at fault in an accident that disables another human being. You may be sued. You may have to live with a lifetime of guilt for the distress you've caused others in a moment too short to contain an ounce of bad of intent.


And while the likelihood of something bad happening is low for any given trip to the store, in the course of driver-lifetime, it is not an unlikely thing. Nearly everyone has had a fender bender; many many people have been in car accidents resulting in some form of injury to someone, thousands of people die in motor vehicle accidents in a given year-- nothing about the risk is anything but in your face.


And still, you will get in your car, just as I will soon get into my car. It's important to get to work, we all need to pay the mortgage. And we're out of chocolate sauce, what is ice cream without the topping? The kid really should learn to play guitar, gotta get him to those lessons. We take the risk because we do it so much, we've extinguished our anxiety about a very real danger. We take the risk because we've decided the quality of our lives is better if we do. And there are a whole host of reasons why every car doesn't simply have the very best safety rating and why someone would purchase any car that isn't the absolute safest one available.


This was a long way of saying, when you take a medication, there are risks. The prescribing doctor should tell you those risks, even if the patient is also a doctor, even if the patient really needs the medication but won't take it if he's told of the one in a million shot of death. The risks may be immediate, they may be long-term, they may be unknown, especially for the medium and long term. Each doctor decides what risks to tell patients, and honestly, these decisions are colored by some very non-scientific things. If the doctor took the drug and it didn't work for him or he had an unpleasant side effect, if he just saw a patient who had a dramatic bad effect even if it's known to be rare, if the last seven people walked in thrilled with how much better Drug X has made them feel, all with words of praise for the wonderful prescriber. No doctor tells a patient every possible side effect-- we simply can't remember them all, time doesn't allow for such lengthy discussions, many patients don't want to hear it. And while a patient should be warned of the more common side effects, will be told of any potentially life-threatening possibilities as deemed by the fated Black Boxes, many are coming for treatment because they are in pain or anguish, physical or mental-- they want the distress to go away and it's obvious that there is risk involved-- they're willing to accept at least some risk in exchange for the possibility of relief.


Stayed tuned for the next post: The Good, The Bad, & The Ugly -- more about medication. But first, I need to run to the store.

11 comments:

Roy said...

Risks are always more acceptable when you know what they are. There's no doubt that there needs to be better ways of describing these risks of medications. A piece of paper folded like a small map, with print too small to read without a magnifying glass, is no way to describe these risks. The FDA has started using a clearer message to describe risks, like the previously mentioned nutrition label.

BTW, I read a book review in the March 26 BusinessWeek about the book, How Doctors Think, by Jerome Groopman, MD. Sounds like a good read.

" The most practical part of Groopman's book is the epilogue. There he encourages patients to challenge their doctors and even suggests the exact language to use. He recommends broad, open-ended questions such as "What else could it be?" or "Is there anything that doesn't fit?" After reading these tales of misdiagnoses and life-threatening decisions, patients will likely decide to take his advice."

jcat said...

I'm a patient. I'd like to think I'm a reasonably intelligent patient. With good access to info, and the motivation to read it, understand it, and if I don't understand straight off, a good enough relationship with my p-doc, to ask for help.

I'm a patient though. And I'm seeing my p-doc because regardless of how intelligent I might be, I'm miserable. I'm suicidal. I'm wasting whatever brain I have because I'm miserable and suicidal.

Regardless of opinions on the Big Pharma co's and their profit motivation, I still don't see that any anti-depressant, anti-psychotic, anti anything drug would actually have made it through the labs, trials, marketing, FDA etc without at least some indication that it might actually be just a tiny bit anti-depressing or whatever. For at least a reasonable percentage of people, and without having serious side-effects for at least a reasonable subset of those people.

Although I still reckon I will take just about any drug available, based on the stats and odds of side-effects, it ultimately still comes down to the most important bit of research....

I trust my p-doc.

And if you don't have that, yeah - change docs, change towns, change countries. Whatever. Maybe, change your mindset.

Psych/neuro stuff is unlike everything else. Stuff that messes with your whole being needs more thought and investigation than stuff that plays with your digestion or your toenails. Ultimately, it requires more trust and belief than anything else ever. Including your marriage partner or anyone else. And if you can't comfortably give that to the doc you have, then yes - move doctors. If you can....then isn't about time a lot of the posters here did that? Wholeheartedly?

Sorry

jcat said...

Sorry, clink - with the exception of most of your patients. -))

ClinkShrink said...

LOL I understand jcat.

Post more kat pictures when you get a chance. They were cute little guys.

jw said...

There are risks in anything, you are quite right. Yet, I cannot help feeling that psych's do not do anywhere near enough to explain risks.

Years ago I ran a metallurgy lab. When a student or new hire came in I spent time explaining the risks of the various chemicals and machinery. For instance, we used a lot of Chromic Acid. I spent time explaining the stuff from the yellow dye effect all the way through genetic change.

There was always someone who didn't listen, especially to the minor stuff. Some students dropped their pocket contents into the salt spray cabinet in spite of being told not to have anything in their shirt pockets. About half of the female students got their breasts dunked in the water trap in spite of being told to use the leather blanket ... that's what it was there for!

On and on that went.

Yet, when seeing a psychiatrist it does seem that there is no discussion at all of risk. No warnings. Not much of anything except "here get this script filled and take it." Some would not listen to risk warnings, but most would.

I cannot help but compare the two things and see the very large difference. That is my personal experience and thoughts.

Sarebear said...

Crap! Alot of this post sounds like the way I think.

One day last year, the school called and said my dd had a bad cough, and they were concerned. So hubby went to go get her, and I went from oh no, it's got to be pretty bad for them to call us, to, ohmygosh, hubby is taking her to the hospital, to ohno, she's going to die.

Written in stark black and white like that, it seems like it should be so illogical and extreme. Thing is, it makes perfect sense to me because I FELT it (ok, ER going on in CBT terms, here.)

Anyway. I just thought it was funny that alot of your post is how I think. I just have to figure out how to sort out the ok stuff from the ramped up stuff.

I agree w/the point you are making about meds and risk and benefits and vs. and stuff.

The first med my former and so far only iatrist prescribed was Lamictal. I got the warning about if a rash appeared, to get in touch with him ASAP. Most times, the rash would not lead to anything, but sometimes it can be deadly. Anyway, lo and behold, in the 5th week my husband noticed a rash. I couldn't get ahold of my iatrist, so I got ahold of whomever was on call for my GP, and they were glad I had called (rather than making me feel like I had bothered them unnecessarily, like in previous instances when I've done this). I followed their advice (this was on Saturday), and got in touch w/the iatrist first thing Monday morning, also as recommended by the GP but I would've done it anyway.

I'm actually sad about the Lamictal rash; I feel that perhaps backing off on the dose and titrating up much more slowly (even though it was fairly slow to begin with), as has seen good results by others, would have been beneficial, esp. since this medicine doesn't add weight (sorry for bringing up that recent issue!), and also has a bit of an anti-depression effect to boot, or so I was told, besides stabilizing mood.

Anyway, sorry to go on so long. I think my Lamictal illustrates several things about balancing risk; the warnings about the rash, and the definite medical concern by the docs when I was one of the few it happened to; the fact that some iatrists out there will take a less drastic approach, back off, and ramp it up slower, although I don't think any official studies have been done (and I was too afraid of iatrist to mention it, and that was early in our relationship too). So different iatrists have a different approach to risk management, regarding risks such as this rash. It just DEPENDS. They do what they think is best, in their medical judgement, but of course that involves a zillion factors, and just cause one doc does it one way, and another, another, doesn't mean either is wrong, necessarily, or at all.

Oops. Long. But pertinent.

Sarebear said...

Or is that imPertinent? hee hee.

Alison Cummins said...

The difference between the risk of driving and the risk of taking medication is that we feel like we understand the first. It's mechanical. We've seen accidents, we may have been in them, we've certainly been in near-misses,

But... what's the risk of a psychiatric medication? Will you be able to see a car coming and pull off onto the shoulder, or will you be sitting there blind as something crashes into you unexpectedly?

Is the risk to my body or to my sense of self?

Who is allowed to judge when the risk is acceptable? Who gets to say how bad I am when I'm sick and how much the meds are helping? I might have very strong feelings about the matter, but at the same time not have full confidence that they are valid - or have no confidence at all that they will be taken seriously even if they are.

The first time I saw my current psychiatrist I had just endured a horrible, suicidal summer trying to get help. I had been taking large amounts of Paxil and finally quit cold turkey because I couldn't stand it any more. I was having nightmares and palpitations and was told (by a psychiatrist) that was not possible because quitting Paxil does not cause nightmares or palpitations. (It does of course, which has since been documented medically. But because it wasn't in the papers yet, my experience was discounted.) I was becoming very frightened that I would not be able to get help and that I would end up killing myself despite my efforts to save myself.

Anyway. I found a psychiatrist. She found me weeping bitterly in her waiting room because her door had been closed and I didn't know whether to knock or not. After a brief interview she said that normally she didn't prescribe meds right away to someone she didn't know well, but I was clearly very depressed. She prescribed me the smallest amount of Zoloft prescribable, explaining that while I would probably ultimately need more, she wanted me to try this small dose for a couple of weeks because there was no sense increasing it to a standard dose if I couldn't tolerate the small dose.

That was a very tactful introduction, and I appreciated it very much. I don't recall that she warned me about any specific side effects, but that was ok because I knew by then that the ones I was most worried about wouldn't be listed in the tiny print on the medication insert or in the CPS anyway.

Sweaty hands, headaches, dry mouth - I could deal with those. Fatal rash - I can see it and report it. But not feeling like myself? Losing the ability to read and assimilate text? Being disconnected from my moral compass? No longer being able to do mental arithmetic, because thinking about numbers has become like trying to pick up ball bearings with chopsticks?

Trying to explain to a doctor that the meds are doing strange things to you and having the doctor say something like, Well what do you expect? Serves you right for trying to use meds to avoid responsibility for dealing with your life.

When I was taking Paxil I read everything I could about it. I had been given it by a GP who told me he knew nothing about it or about treating depression, but he had samples of these lying around and I could always try them. I didn't find anything in the CPC or patient inserts I felt was relevant. (Before quitting it cold turkey a year later I also reviewed the available material and determined that the only possible risk to quitting the stuff quickly was perhaps a little nausea. I was perfectly prepared to risk a little nausea to get off the hated Paxil. Hah!)

When I got the Zoloft, I went briefly over the patient inserts and confirmed that it was basically the same dry mouth and tummy troubles as for Paxil. Yawn.

While I was taking valproate, I could barely remember what it was called. "Those red pills."

The difference is largely that I trust my psychiatrist. Sure, I trust her not to prescribe me anything that she thinks is high-risk without warning me, but she let me know right off that she didn't necessarily expect that any given med and I would hit it off, and gave me lots of room for feedback of a more nebulous sort. I knew I could tell her if something wasn't right, because she started off with that being one of her primary concerns.

Anyway, there's more to risk and its acceptability than numbers or documentation or fine print. And I wish there was a way of documenting how people felt about being on a medication that went beyond percentage of people reporting headaches.

Sarebear said...

Yeah, Allison . . . that factor that is the doctor and the patient working in tandem, the patient reporting the problems on the meds, and the IMPACT, the LEVEL and AMOUNT of impact, both positive and negative, that the meds have on the patient's life . . . it is, of course, up to the patient to report difficulties, and also to express what they think might be more than they can handle, in the way of negative or side effects, and then the iatrist can discuss with them options, the reasoning behind prescribing that med, with discussion of it's efficacy vs. it's downsides, the results of going off of it vs. the meds' downsides . . . the thing is, some docs are a bit . . . affronted when the patient reports problems, and seems to be questioning the doc's judgement in prescribing it. I had to push through that, and do it, even though my iatrist reacted extremely personally and was rather offended at me being so persistent in that one discussion about what was going on that I was concerned about, w/being on the particular med. See, I knew that I needed to, for my best medical care possible, to report in full (well, not hours of detail but you get my drift, condensed as much as I am able but to tell it so I felt like I had given "enough" for him to get a picture, or feel for what I was trying to express.) Since he was affronted, I EXPLAINED that, that last, that I felt as the patient in the doc/patient relationship, it was part of my "job" as patient to tell my thoughts and concerns, even if it seemed like I was questioning his opinion, because then we could have an open, full, and helpful discussion about it.

This is one of the things that was a big problem in our doc/patient relationship. When I was communicating with him, he seemed to be taking things in a much different way than what I was expressing. That probably means there were both problems in my expressing things, and problems with his listening and interpreting, but I feel I did a pretty good job of expressing stuff. Anyway, he also seemed to take things I'd say as being about a different . . . aspect of . . . beingness, a completely different page of whatever was being discussed, than I actually was talking about. Anyway, rather frustrating.

My POINT though, is sparked by stuff Allison said; that factor that is the working relationship and therapeutic relationship between iatrist and patient . . . the factor of the interplay, the exchange, the openness and trust . . . the ability of the iatrist to respect the patient, and accept the patient's questions and concerns and sometimes reluctance or even desire to stop a med . . . the iatrist's willingness or lack thereof to LISTEN to this and to be OPEN to exploring the situation . . . of which degree of either willingness or lack thereof is a HUGE factor in this partnership for improving and maintaining one's mental health.

I don't know if you followed all that . . . I've been up all night, AGAIN.

Just . . . there's a factor in the risk management of meds, of RESPECTING the patient (although some patients surely don't respect or treat their doc w/respect) and encouraging open and even critically explorative reexamination from time to time, of the meds, THAT INVOLVES THE THOUGHTS< FEELINGS< AND EXPERIENCE< , QUESTIONS, CONCERNS, ETC. of the patient.

Ack, WAY long. Sorry!!! When considering meds and pros and cons, it ultimately is not just the iatrist's judgement involved, although I respect the iatrist and if they continue to feel I should be on something I'm having probs with, I'd keep on. But you see there, that ends up in my lap as my decision.

tangent 90 degrees said...

Apologies for the long comment
I take an active role in the risk/benefit analysis with my psychiatrist when it comes to meds. I wasn't always such an active participant in this process.

A little more than 6 years ago while taking Tegretol, I started exhibiting severe flu-like symptoms; and several days later, friends tell me, I began to jaundice. As timing would have it, the results from my monthly blood work became available. I'm sure you can figure it out -- my liver enymzes were out of this world -- AST, ALT, and GGTP all in the 1200's.

Because I had never been briefed of the possible risk of FULMINANT LIVER FAILURE! I didn't seek any extraordinary medical treatment. Just sought routine care from my GP because I felt like crap --nearly killed me.

The good thing about fulminant liver failure is that it doesn't waste much time in announcing it's arrival and it's usually quite dramatic. If that 10-day coma doesn't get your attention nothing will ;) But what really grabbed my attention were those 108 staples in my gut and someone telling me I had had a liver transplant. HELLO!

Knowing all the risks of tegretol would not have changed my decision to take the med. However, I would have prefered to know these risks because I would have been a more informed patient, better able to advocate for myself.

jw said...

sarebear: I know the feeling of not communicating with the psych. There were many times when I was sure I was speaking a language she did not understand. HMPH! I've always thought my english quite good, but ... the communication was simply not there.

I do not know why this happens, but you and I are certainly not the only ones to express the problem.

---------
I might add another note on risk: I never bothered fully explaining WHY I made everyone boot lace their shoes/boots other than saying it was so that the footwear can be cut off faster. The full reasoning would be several pages long.

It seems to me that I never got even that much (do it this way ... watch out for this) from a psychiatrist.

The risk thing has been really frustrating.