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.