Wednesday, July 30, 2008

Informed Consent for HIV Testing

This is a topic that's bothered me for some time. In most US states it is state law that HIV testing first requires the patient's (often written) informed consent - this is STUPID. See, even while you would think most people suspected for HIV would eagerly want to know if they were infected and then change their behavior to help their own health and protect the people around them there remains a significant population who frankly prefer to remain ignorant - or at least maintain their denial. The fact is that the population of people who tend to get HIV are those who are not very health conscious and engage in risky behavior like having unprotected sex with multiple casual partners, especially men who have sex with men, and share needles for their drug habits. These are people who prefer living life as if there are no consequences and I don't think medical ethics demands that we kowtow to their preferences and permit them to remain nominally ignorant as they remain a public health threat.

As far as I know, for every other infectious disease it is standard policy in America to assume presumed consent by the patient and test at will unless the patient proactively refuses. You don't need informed consent to test for hepatitis or Lyme disease or syphilis, so why HIV? Now I know why HIV has been put in this special legal bubble. It was once upon a time an incredibly scary disease, poorly understood with severe social stigma and no real treatment, so it made sense to protect a population which had little interest in finding out they had a death sentence. Few of them would seek medical care generally if they knew they'd be forced to face the horrible truth.

Fair enough, but that was decades ago and now with proper treatement HIV is more of a chronic disease. Infected individuals can lead a fairly normal life. What was once sensible medical policy is now obstructive to getting this life saving treatment to people and is a real threat to the public. People should be routinely tested if they are suspected of HIV, need to be told sooner rather than later and face their fears so they can get the treatment they need. (Whether they ought to be penalized if they don't subsequently change their behavior vis-a-vis public health concerns is another question. After all, STDs are essentially behavioral disorders more than anything else.)

As some have noted, I haven't been doing much blogging this past little while and the reason for this is that I just started doing my clinical rotations at med school and as you may imagine that tends to take up some time. For the past six weeks or so, I've been working at a hospital in the Bronx where HIV is more prevalent than the common cold in the inpatient population. Zero exaggeration. There were times when easily more than half the patients on our service were known to be HIV positive. And if not HIV then you can be sure as the ever hopeful Obamanicks that the patient has got hepatitis. Maybe I'm getting a poor cross section, but it seems like you can hardly throw a rock in the Bronx without hitting a person with a severe, chronic infectious disease.

Anyway, while I had been thinking that way about HIV for a good while, what really hit the point home was a patient I've been following. Guy came in for some difficulty breathing over the course of several weeks and was found to have an AIDS defining pneumonia that only the immunocompromised can get and a CD4 count in the single digits. Patient refused HIV testing. His wife communicates with the doctors by telephone about his condition and she's casually complaining about how she used to be such a healthy person but lately she's been feeling sick. Hum...

So normally, with a positive HIV test, you can break with normative patient/doctor confidentiality and inform the spouse that their sexual partner has HIV if you have reason to believe the spouse won't do the informing on their own. But because this guy is refusing testing, the doctors can't legally label the patient as HIV+ even while he's being treated with a clinically AIDS-defining pneumonia and therefore cannot tell the wife. Welcome to the world of medico-legal meshugas. Anyway, what we ended up doing was telling the wife to tell her family doctor that her husband is being treated for a pneumonia with this and that drug regimen, which any astute physician would immediately understand to be HIV related and have her follow up with him. Hopefully that'll work out as best it can.

Of interest, it seems like the CDC recently came closer to my way of thinking and as of 2006 their recommendations are:

-HIV screening (another term for broad-based testing) for patients ages 13 to 64 in all healthcare settings after the patient is notified that testing will be performed unless the patient declines (opt-out screening).
-HIV testing of people at high risk for HIV infection at least once a year.
-Screening should be incorporated into the general consent for medical care; separate written consent is not recommended.


Now, I'm for the total normalization of HIV testing to be like other infectious diseases. If the patient is in the hospital then you can just test their blood for whatever without special notification. We don't tell patients that we're testing for hepatitis - which we do test for regularly. HIV should not be treated like a legally special condition and it's time for the state legislatures to get on the ball with this one.

57 comments:

the zak said...

A thought experiment... the strategy of "Let's get tested TOGETHER
BEFORE we have sex, for A VARIETY of STDs."
A sexual health checkup reduces ambiguity and can be
like anything else potential sex partners might do together
http://NotB4WeKnow.blogspot.com

Orthoprax said...

Zak,

Well, that's fine and all, but pro-active testing is way too big a step for the population I was talking about.

Miri said...

"After all, STDs are essentially behavioral disorders more than anything else.)"

Sorry, what does this mean?

Kylopod said...

Since I can't email you, I will tell you here. Sorry to intrude on the discussion.

In my latest post to my blog, I quoted something you wrote a while ago. I have a policy that whenever I quote a fellow blogger, I notify them immediately.

Here is the post:

http://kylopod.blogspot.com/2008/07/gods-third-party.html

Orthoprax said...

Miri,

"Sorry, what does this mean?"

It means that sexually transmitted diseases are largely due to behavioral etiologies. If we changed peoples' behaviors then we could prevent STDs.


Kylopod,

Alright, thanks for the link - but you can email me. Orthoprax2@yahoo.com - my email is listed on top.

the zak said...

The 3 SEX RULES

SEX RULE NUMBER 1
Sex is more important than dying.

SEX RULE NUMBER 2
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SEX RULE NUMBER 3
If people could change their sexual behavior we wouldn't be here.

Miri said...

orthoprax-
then they are the result of behavioral disorders, and not the behavioral disorders themselves.

sorry, nipticky. and, also, I was confused.

the zak-
SEX RULE NUMBER 3
If people could change their sexual behavior we wouldn't be here."

Are you implying that people have no control over their behavior? I find that sort of offensive.

Orthoprax said...

Miri,

"then they are the result of behavioral disorders, and not the behavioral disorders themselves."

IV drug use and having unsafe sex are not behavioral disorders, they're just bad ideas. It's kind of a running joke in the circles I work with to call STDs behavioral disorders.

Miri said...

Yeah ok, I get that. It bugs me grammatically though.

the zak said...

The 3 SEX RULES

SEX RULE NUMBER 1
Sex is more important than dying.

SEX RULE NUMBER 2
Sex is more important than killing somebody.

SEX RULE NUMBER 3
If people could change their sexual behavior we wouldn't be here.

          > Are you implying that people have no control over
          > their behavior? I find that sort of offensive.

Proof that people have complete control over their behavior is that nobody has ever been infected with human immunodeficiency virus or died from it. And the larger picture, there's never been a war and nobody has ever died by another person's hand because everybody has complete control. Everything is hunkydory, nothing to see here, move along.

Miri said...

Come on dude. That argument doesn't even pretend to anything like logical consistency. The fact that people are capable of controlling themselves does not therefore mean that they will; and the fact that they don't is in no way proof that they can't. Seriously, you really buy that?

Also, I find it a little ridiculous to assume that all wars are founded on the basis of a lack of self-control. What does that even mean? Wars involve so much effort and expense and damage to all involved, it's not like people fall into it by accident. There's a certain amount of forethought and planning, even in the poorest conducted wars. Individual instances of random violence can be attributed to a lack of control. Wars are far too complicated for the cause to be that simple.

the zak said...

It's obvious from the number of people who've died from acquired immune deficiency syndrome that they obviously didn't have control or that they explicitly wanted to get AIDS, get sick and die. I suppose you could say the prospect of sex was just so appealing that they decided to take the risk which of course is the point of one of those sex rules.

Miri said...

I think a lot (I can't say most or any percentage at all, bc I don't know) of people who contract HIV got it bc they were unaware that their partner had it; in some cases, possibly their partner didn't know. Also, it depends on who we're talking about. I mean, if you want to discuss the epidemic in Africa, that's a whole other ball game. In the neighborhood Orthoprax was describing, it sounds like most people don't want to know, so they pretend they don't know, that they have HIV, and they don't get tested. Obviously someone like that isn't going to tell their partner. But I think a lack of self-control is hardly where the problem lies. More likely it's fear and ignorance. I do find it interesting, however, that you insist it is the basis of pretty much all evil, and moreover that there's nothing people can do about it. On some level, I kind of wish it were that simple.

Orthoprax said...

Zak,

"It's obvious from the number of people who've died from acquired immune deficiency syndrome that they obviously didn't have control or that they explicitly wanted to get AIDS, get sick and die."

Say what? That's a grossly false dilemma. Much more likely are simple things like ignorance, carelessness and peer pressure rather than lack of control.

the zak said...

          > I think a lot (I can't say most or any percentage at
          > all, bc I don't know) of people who contract HIV
          > got it bc they were unaware that their partner
          > had it; in some cases, possibly their partner didn't
          > know. Also, it depends on who we're talking about.
          > I mean, if you want to discuss the epidemic in
          > Africa, that's a whole other ball game. In the
          > neighborhood Orthoprax was describing, it sounds
          > like most people don't want to know, so they
          > pretend they don't know, that they have HIV, and
          > they don't get tested. Obviously someone like that
          > isn't going to tell their partner. But I think a lack
          > of self-control is hardly where the problem lies.
          > More likely it's fear and ignorance. I do find it
          > interesting, however, that you insist it is the basis
          > of pretty much all evil, and moreover that there's
          > nothing people can do about it. On some level, I
          > kind of wish it were that simple.

no control of your fears...

also known as get a grip

_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
It's obvious from the number of people who've died from acquired immune deficiency syndrome that they obviously didn't have control or that they explicitly wanted to get AIDS, get sick and die.

          > Say what? That's a grossly false dilemma. Much
          > more likely are simple things like ignorance,
          > carelessness and peer pressure rather than lack
          > of control.

Ignorance: not being careful about your education, not educating yourself

Carelessness: not having control of yourself in an environment where you must be careful--or it will kill you

Peer pressures: not being able to control your urges to comply with peer pressure

Orthoprax said...

Zak,

How does being careless transform into "not having control of yourself"? You can't just redefine words to fit your point of view.

the zak said...

to "take care" is to be in control of a situation.

Orthoprax said...

Zak,

That's great. But being careless describes a state of cognition not control. They intentionally and purposefully did what they did without due consideration of the potential consequences.

the zak said...

isn't giving up control a kind of control?

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