So now what do we do?

February 22, 2011 10:18 AM

So we are in an icky situation involving a friend dying of AIDS. Advice?

So here is the story.

A friend of the family was checked into the emergency room almost a week ago with an infection. His health quickly deteriorated -- multiple organ failure -- and he is now in a coma. It was revealed to us, in possible violation of his privacy rights, that his body can't fight off the infection because he is suffering from AIDS. That in itself was pretty shocking because he is so young, and certainly shocking for his family (who have a very strained relationship with him, and were never totally accepting of him).

We don't know for sure if he knew his serostatus. But we are assuming he didn't, since he hadn't mentioned it to the doctors before he fell into a coma, and one of us have had discussions with him where he had mentioned he hadn't been tested.

This is where the problem arises. We were more aware of the social circles he went with than his family ever was, including his love life, but by no means have a full accounting of it. His prognosis looks dire, and the question is what should we do with the knowledge of his serostatus if he should pass away. It feels like we're obligated to do something with this knowledge, especially if other people are at risk, but we don't know what, or even if that's ethical (and/or legal), considering privacy rights and all. We thought about using anonymous, "get tested" emails, like this, but for some folks the only contact information we have are of the non-anonymous kind (i.e. Facebook). We also have considered telling one of his closer friends who may be better able to get the information to the right people. Maybe its not our place?

We are kind of at a loss of what to do, and we were hoping the hivemind would have advice. We're really hoping that we won't have to confront this situation, but his health hasn't improved. Here is a throwaway email if anything is needed: [e-mail]

posted by anonymous to Human Relations (35 answers total)

It was revealed to us, in possible violation of his privacy rights, that his body can't fight off the infection because he is suffering from AIDS

Revealed by who? You don't really know for sure that he has AIDS, right?

If it were me, I would give the guy his privacy, and hope that his partners knew what they were doing if/when they had unprotected sex.

I'm sorry for your situation.
posted by roomthreeseventeen at 10:23 AM on February 22, 2011

"It feels like we're obligated to do something with this knowledge..."

No, it's the opposite. You're obligated to do nothing with the knowledge. There are well-establish public health protocols for notifying potential partners, and you should rely on those protocols. It's not appropriate for you to do anything more than that.
posted by iknowizbirfmark at 10:25 AM on February 22, 2011 [20 favorites]

If he pulls through then leave it alone.

If he dies then someone needs to tell his partners. It would be inhuman not to.
posted by FAMOUS MONSTER at 10:25 AM on February 22, 2011 [18 favorites]

It feels like we're obligated to do something with this knowledge

No, you're not. It's a violation of his privacy. If you feel a sense of obligation, donate to or volunteer for an HIV prevention program.
posted by desjardins at 10:27 AM on February 22, 2011

If a health care provider revealed his HIV status to you without his explicit consent, his rights under HIPAA were probably violated. Do nothing with this information (which, as said above, might not even be true). Sadly, people will probably be able to put two and two together should he pass away.
posted by ThePinkSuperhero at 10:28 AM on February 22, 2011 [2 favorites]

If it were me, I would give the guy his privacy, and hope that his partners knew what they were doing if/when they had unprotected sex.

Really? Really really? This means they may DIE you know. Just like this guy is. Is that ok with you, cause I would really like to know if I was in that situation. Might be nice to know, right?

There are ways to do this through to public health channels. Talk to the doctors and ask how to give contact information to appropriate public health officials
posted by d4nj450n at 10:33 AM on February 22, 2011 [24 favorites]

I would discuss this with the doctors-- including the fact that his right to privacy may have been violated and that it has placed you in an unenviably shitty ethical situation.
posted by fairytale of los angeles at 10:34 AM on February 22, 2011 [8 favorites]

You're not in an icky situation at all. You received information that you should not have received. Rather than plot how you're going to make yourself a hero by spreading disinformation about your "friend" (and it could very well be disinformation) you should be there to comfort your friend in his final hours. Even if he does have AIDS, how do you know he had multiple partners? Even one? How do you know he got AIDS from sex at all? You do not. Leave this alone.
posted by brownrd at 10:38 AM on February 22, 2011 [3 favorites]

there is probably a social work person or someone at the hospital where your friend is being cared for that can help you with this.
posted by Medieval Maven at 10:44 AM on February 22, 2011 [13 favorites]

Right to know you may have been exposed to HIV > right to privacy.
posted by notsnot at 10:45 AM on February 22, 2011 [26 favorites]

If this is in the US, all new HIV diagnoses are reported to the local health department. The local health department will seek to inform any sexual partners of the newly diagnosed individual that they have may have been exposed to HIV. If this individual knew his HIV status before hospitalization, this may have already have taken place. If he did not, it will take place if he survives.

As a gay man, if a young gay male friend of mine were to die suddenly in this manner, I would be very concerned that untreated HIV was the cause. Hopefully, his sexual partners will also understand that possiblity and get themselves tested.

You should do nothing. His HIV status should not have been shared with you without his consent, and there is no reason for you to pass it on.

On a side note, while HIV is a chronic, manageable disease when treated properly, people are still dying because they do not know they are infected and/or do not seek treatment. The first opportunistic infection can still be a killer. I hope your friend pulls through, and I hope everyone who reads this thread goes and gets tested for HIV.
posted by hworth at 10:46 AM on February 22, 2011 [6 favorites]

We also have considered telling one of his closer friends who may be better able to get the information to the right people.

There's a difference between telling one of his friends what the doctor accidentally said, and having a conversation about your mutual buddy X in which you find out whether this friend knows anything about X's health issues. If you hadn't been recipient of a slip of privacy, would you be wondering why X was suddenly so sick? Would you be suspecting why X was suddenly so sick? Do you think this mutual friend might also be wondering/suspecting?
posted by aimedwander at 10:46 AM on February 22, 2011

Nthing talk to the hospital's social worker and letting notifications proceed as per established protocols. It's not appropriate for you to undertake this yourself.
posted by Wordwoman at 10:51 AM on February 22, 2011 [1 favorite]

there is probably a social work person or someone at the hospital where your friend is being cared for that can help you with this.

This is the only useful answer given so far.

(Also, there is a crap-ton of misinformation here about HIPAA, but someone else is better qualified to address that than me.)

Ask to talk to the hospital's social worker, and express your concerns in a confidential way to them. Medical professionals have established protocols for public health issues such as this one. They can help you.
posted by anastasiav at 10:53 AM on February 22, 2011 [1 favorite]

This is why there is a Public Health Office in every state and county. Contact them, ask what the protocol is. It is their job to deal with this.

I'm so sorry you're in this rotten situation, and I hope your friend pulls through.
posted by theora55 at 10:53 AM on February 22, 2011 [3 favorites]

should he pass away, his HIV may well be listed on his death certificate, in which case it is no longer private information. But medieval maven's social worker advice is absolutely your best call.
posted by Mayor Curley at 10:59 AM on February 22, 2011

First off, sorry to hear about your friend, I hope he pulls through. Secondly, the problem with letting the officials handle this would be if they don't know who his sexual partners are if he is dead and hasn't filled out the forms. What I would say is the best idea if your friend dies, is to find a social worker or someone in the hospital who deals with the HIV status notification stuff, tell them that you believe your friend had HIV, but that he may not have known or been tested before and so his partners may never have been notified. Then ask them what you should do. You can mention that you may know some of his partners, but let them guide you.

If I was friends with any of his partners, I would have to say that I would probably have a discussion with them regardless of privacy laws if he died. I can't see letting another friend die just because my other friend may or may not have been forthcoming about his status (or even known himself). But for FB friends and the like, that's a no telling zone, because of privacy considerations (amongst other things).
posted by katers890 at 10:59 AM on February 22, 2011 [3 favorites]

Response by poster: Why don't you talk to your friend about it? Explain the situation, ask if he would like to notify partners himself (whether anonymously or not), etc.
posted by Anonymous at 11:20 AM on February 22, 2011

schroedinger: according to the question, the friend is now in coma.
posted by Ms. Next at 11:23 AM on February 22, 2011

schroedinger, OP said the friend is in a coma.

I agree with everyone who has said to contact a social or public health worker. They'll be able to confirm a diagnosis and know how to proceed according to protocol. It's a sticky situation, so try to guard against accepting any more responsibility than is absolutely necessary, especially where privacy and disclosure are concerned.

I'm very sorry for you and your friend and am sending good thoughts.
posted by superfluousm at 11:24 AM on February 22, 2011

You're obligated to do nothing with the knowledge.

I'm not sure how to respond to this comment. If the obligation referred to here is an ethical one, then we can agree to disagree. If the obligation referred to is some sort of legal one, I'm here to tell you you're wrong. Talking about health statuses between friends does not violate any laws. Ethically, I'm completely unconvinced that it's wrong to talk about transmittable diseases without explicit consent from one of the infected. Indeed, since we know that we feel fine saying "Suzie has a cold, you might want to wash your hand since you just shook hers," we have to assume that those who think the ethic of privacy is the most important one in this situation think that there is something shameful about having HIV. I don't agree. I think privileging silence here is a way to foster the stigma associate with HIV that prevents people from getting tested and treated.

I would call the local health department, or maybe the people responsible for reporting at the hospital, and I would say that you have information about potential contacts for your friend. A good Disease Intervention Specialist will know what to do with the information.

I'm sorry about your friend.
posted by OmieWise at 11:31 AM on February 22, 2011 [5 favorites]

Here's the thing: you have information of an unknown provenance and validity.

The nurse could have been mistaken. She could have been talking about another patient. I think it would be very wrong of you to actually tell people that "John Smith has AIDS," because it's essentially gossip at this point. And corrosive gossip, to boot.

However, everyone should get an HIV test. I mean that literally: everyone. There is no down side to convincing someone to get tested.

You are now faced with two sliding levers: one goes from "public" to "private" and the other goes from "subtle" to "not very subtle, actually."

Public: Post a Facebook announcement, update your blog, twitter, put it in your email footer, whatever.

Private: Message each person individually.

- and -

Subtle: "I've lost a good friend today. Everyone should get tested for HIV. Here is a CDC website that can help you find a clinic in your area."

Not Very Subtle: "John Smith is dying of a fast-spreading infection that wouldn't have been very serious for most people, but his immune system wasn't able to fight off.

Weren't you guys an item a few years ago? Apropos of nothing, I strongly believe you should get an HIV test at your earliest convenience."

Personally I would probably go with Private/Not-Very-Subtle. Even though it's not the most ethical choice. Sometimes you have to make the decision to do the wrong thing, and this is one of those situations where I would.
posted by ErikaB at 11:42 AM on February 22, 2011 [1 favorite]

His partners need to know. I realize he has a right to privacy, his partners have the right to save their lives and obligation to not pass the disease on to others.
posted by fifilaru at 11:46 AM on February 22, 2011 [4 favorites]

Please keep in mind that, if you aren't a public health worker who is tasked with doing so, disclosing someone else's HIV status without their consent, even with the best of intentions and if their , can open the door for them to sue for damages because of psychological harm, depression, and damage to reputation which you may have caused.

If your friend dies before coming out of the coma, it will become the responsibility of his health care providers to inform known sex or drug partners. If this worst case scenario happens, work with them on the best way to do this, depending on your state's partner notification laws. Every state (and some metro areas) have a different way of dealing with this. For many reasons (legal, ethtical, and otherwise), you'll be better off working with these professionals rather than doing it on your own.
posted by MCMikeNamara at 11:57 AM on February 22, 2011 [2 favorites]

cut-and-paste error "if their" should read "if they're (meaning those you tell) may have been put at risk"
posted by MCMikeNamara at 11:58 AM on February 22, 2011

Jesus Christ. Incredibly cavalier answers up the front of this thread that are happy to destroy the lives of the living to preserve the nebulous privacy rights of the dead.

Per OmieWise, they are also informed by some 1985 concept of AIDS as the ultimate unspeakable stigma that must be hidden at all costs, even at the risk of infecting others.

Of course you tell the former partners if you friend should die. You don't rely on the possibility they may read the bloody birth certificate. Or, for fuck's sake, that they "should have known what they were doing".

If the friends are gay, the conversation will still be hard, but keep in mind that discovering potential exposure to HIV after sex is not exactly unheard of in big cities with high rates of HIV.
posted by dontjumplarry at 12:02 PM on February 22, 2011 [7 favorites]

*death certificate* is obviously what I meant
posted by dontjumplarry at 12:03 PM on February 22, 2011

Two clarifications:

1. The difference being, "John Smith has AIDS" is a rumor. Whereas "John Smith is dying of an infection that a health immune system would have fought off" (or however you want to phrase it) is a known fact.

(Not necessarily something that you have the right to share with people, but it's a known fact nevertheless.)

2. The Public/Subtle option is the most ethical of the four. And it's also the easy way out. But it is also the least likely to actually spur anyone to go get tested.
posted by ErikaB at 12:09 PM on February 22, 2011

You don't just want any hospital social worker: ask for the bioethics consult service.
posted by paindemie at 12:10 PM on February 22, 2011 [1 favorite]

All this uninformed chirping about how privacy rights don't mean anything when people's lives are at risk and how his partners have a right to know ignores that there are existing public health procedures performed by professionals in a manner consistent with the law, with the right experience to deal with the issues that arise. If you really feel that those professionals don't have the right information to proceed, reach out to the applicable public health department to discuss the information that you think could be useful.

I won't even begin to address all the strawmen that some posters have raised about being "happy to destroy" lives and similar responses. Those are the approaches and views that are irresponsible and cavalier.
posted by iknowizbirfmark at 12:14 PM on February 22, 2011 [8 favorites]

If he passes away, tell the sexual partner(s) that you know of that he was likely severely immunocompromised which resulted in the quick progression of his condition. Suggest that it would be very prudent to check on their own health status with a HIV test.

If you are friends with any of them, do what you can do to support them in going through testing, which can be scary and anxiety-provoking.
posted by arnicae at 12:51 PM on February 22, 2011

Twenty years ago a dear friend of mine showed up on my doorstep late at night, incredibly upset. She'd just had a phone call from a friend, who had been told that a guy my friend had slept with had died of AIDS, and the friend felt it was her duty to pass on the information.

I went with her to get tested, and the test came back negative. But there was still the lingering question, (remember 20 years ago there was a lot less certainty about how reliable a negative result was.) So she kept getting tested every 6 months.

Then she found out the guy had not, in fact, died of AIDS. He'd been in a sticky legal situation where he didn't want to have to testify in a criminal case involving some other friends, and he happened to be offered a job overseas, so he skedaddled in a very sudden and quiet way, and somebody started a rumor explaining his sudden disappearance. By the time her friend heard the rumor, it was taken as fact.

My friend finally tracked down the guy, and they both went and got tested together, and they both tested negative, and then she was able to finally put that worry to rest. But she carried it around for YEARS. For no good reason.

If it is not your job to inform people they may have been exposed to something like HIV, it is not your job to inform people they may have been exposed to HIV. Leave it to the professionals.
posted by ambrosia at 1:37 PM on February 22, 2011 [1 favorite]

Right to know you may have been exposed to HIV > right to privacy.

I would disagree.

Anytime you have sex, you should pretty much assume you could have been exposed to something. It's just common sense. As an adult, your responsibility to your own sexual health is to get tested, whether or not you necessarily think you have a reason to. If his former partners haven't chosen to do this, that's their choice, and they could have been exposed to any number of things from any number of other people. It's not your job to keep strangers safe, you have to trust that adults know how to take care of themselves.

For myself, I've only ever been in monogamous relationships with partners who I know to be HIV negative and I've still been tested. It's something that everyone should do, and if his partners haven't done so, that's no one's problem but theirs. You shouldn't wait until you need a reason.

It doesn't hurt to just put up a PSA to ALL of your friends saying "Hey, have you been tested recently?" (obviously without mentioning your friend's status specifically) because EVERYONE should take charge of their health (sexual and otherwise). I have friends who have put up messages like this with links to information about HIV and it never seems like anything other than general concern.
posted by sonika at 1:42 PM on February 22, 2011 [3 favorites]

Weighing in on the legal aspect and not the ethical one: Privacy rights expire upon death.
posted by lockestockbarrel at 1:46 PM on February 22, 2011

Mod note: few comments removed - ease back on the snarky sarcasm and answer the question and take side conversations to MeMail please.
posted by jessamyn (staff) at 6:38 AM on February 24, 2011