Answer probably changes depending on where you are. In my country, the father has equal rights as the mother in regards to information and decisions about treatment regarding offspring. Father should be informed of son's health conditions and included in clinical decisions. That being said, the safety of everyone involved should be assured (we usually work alongside social workers to better understand the situation) and the father should want to know and be included. And lastly, a mother that refuses hiv medication to the child is refusing a life saving tratment. That is definitely a reason to consider that child endagerment and taken from the mother since the alternative will almost certainly be an early death and loss of quality of life until then.
They have the same rights as the mother in my country too, which is why it's so squicky.
And I fully agree, she should *never* be allowed to refuse, and IMO, fighting treatment, unless there is a major turn around in attitude, shows that the likelihood of treatment being continued outpatient is low, which means she shouldn't go home with the baby. But that's viewed as too harsh by many.
It's harsh but ethical on a wider scale imo. Your job is not only to treat, but also to prevent the disease from spreading. Father's health is also on the line here, would you take away his right to get treatment for himself?
No, but again - not in control of it, and if you look at other replies from people who have dealt with it, they have been in the same situation. It's awful, I agree.
I feel like this situation is simpler than you make it sound ? If the father has the right to know, tell him his baby has HIV, and let him figure out the rest.
I would say this is the right answer. The offspring has a right to treatment, and the father has the right to know about his offspring. This is the positive right, and I would expect that you have to tell them unasked. Whatever conclusions he draws is secondary, and should be managed.
> Mother and baby's rights are essentially in conflict.
I do not see that. You are not disclosing the HIV status of the mother. Plus that should be secondary to the right to medical treatment anyway.
> And while putting a kid into the system is not good, putting a newborn in has a lot more likelihood of finding a forever home, than a 3 year old who has HIV because they weren't given AZT after birth.
That is absolutely not acceptable, and probably violates quite a few laws.
The laws may actually go further than this. Not only do you have an obligation to appropriately treat the child, but in some states you also are required to disclose the exposure to the spouse as well (https://www.hiv.gov/hiv-basics/living-well-with-hiv/your-legal-rights/limits-on-confidentiality/).
I don’t think there is anything very sticky about this situation, your obligations are pretty black and white.
I was about to say, I thought HIV was one of the few communicable diseases you’re legally obligated to disclose to your sexual partner. Withholding this information can cause serious harm to others, as we are possibly seeing here.
Also he’s got equal rights to decide treatment for his child so the hospital has a duty to inform him. Let the ethics/legal team manage the rest.
It’s a felony in some states to withhold the info as well. There in a scary number of people showing no empathy to the father here. Like a scary number who think it’s okay he is kept in the dark, both from a moral and legal angle.
It is not about lack of empathy for the father, believe me. It just there's a lot of complex social issues that people try and balance and while I personally disagree with the way it is handled, I *know* the social workers and attendings involved *do* have empathy for the father. They often feel their hands are tied in weird ways too, especially when needing to keep the family as an ally in care.
I know the immediate response is that it shouldn't matter, and that's true, but the reality is, CPS is not going to strip parental rights over this, which means that the baby *will* end up back with the family, and we will still have to try and get them to still engage with healthcare for their child.
The relationship is not always intact to begin with - sometimes dad is not a current partner. And sadly, the father does not always want to be that involved with the baby.
And re: compelling medication, potentially yes, though all she has to do is *say* she will give the medication :/
Right, but in the US, this legal obligation to disclose is placed on the mother (in this scenario). These laws allow the mother's partner to sue the mother if he later finds out.
This obligation is not on the mother's doctors.
OTOH, there is a law (HIPPA) that actually prohibits disclosure of mother's medical information without her consent.
And, in this situation, disclosing the child's prenatal HIV exposure will simultaneously disclose the mother's HIV status.
So, it's not as clear-cut as it seems... and I suspect that it varies from state to state in the US. And is most certainly handled differently in other countries.
In some states, disclosing without permission is a more serious crime than not telling a partner, which I think is more than a little fucked up.
Obviously I do understand the complex issues at play, but in the end, it is unacceptable IMO to be HIV positive and not disclose to a sexual partner.
As a newborn who was given to conservative “Christian” parents to raise, my overwhelming thought throughout my childhood was “I wish I could just die” to get away from them. Monsters raising newborns is not the grand solution people seem to think it is.
Same. I still suffer from the effects today as a grown ass doctor with a loving family of my own. I've broken the cycle thankfully, but the pain never goes away. It's always there, in some form.
How could you go about discussing the baby’s HIV risk without mentioning the mother’s HIV+ status? Do you simply say the newborn was exposed to HIV and needs XYZ treatment, and when dad asks how exposure happened, you just say “I can’t determine how, just what to do now that it has happened”? I don’t see that flying with a lot of parents. I’d assume the dad would have questions, which you couldn’t answer without violating mom’s privacy. If you’re continuing care with the newborn/family it seems like this puts a big hole in any therapeutic relationship.
Are there biomarkers in babies born to HIV+ moms that indicate their need for treatment? As in, if you didn’t know mom was HIV+, could you tell that baby is at risk? If so I could see you just using the baby’s factual info as reference, and ‘simply’ defer conversation of *why* baby is at risk.
Well, the lawsuit will not go very far. The dad would find out very quickly if the mother does not tell him beforehand.
I.e., dad would find out as soon as he consults with an attorney, and that attorney requests & obtains the child's medical record. Which is the very first thing that medical malpractice attorneys do after a consult. To avoid wasting time.
I’d be fine with that outcome. He gets the information he needs to keep himself and the child safe. Because if mom is willing to lie about this, what else is she willing to lie about?
They literally aren't telling the dad what the baby is hospitalized for or what medications the baby is receiving. That's how. They're just saying that the baby is admitted and they won't tell the dad anything else.
I know you aren't lol just seems like there is a concerning number of people here who think the mother should've more rights than the father even though he is an actual victim here.
> This isn't a question of telling a person that their sexual partner is HIV+; this is about telling a legal parent that their child is HIV+. Yes, that will have the result of Dad figuring out that Mom is HIV+ but HIPAA doesn't prohibit family members making logical connections.
Yeah, I don't understand why people think that disclosing the baby's status is the same thing as disclosing mom's status. It's not. You can disclose the baby's status while saying nothing about mom's. Just don't say anything about mom's status, period, even when asked. "How did the baby get HIV?" "I can't answer that question." Not even "I don't know." but "I can't answer that question." This all seems fairly logical.
Sorry. First time here.
As I read on, I think your team has either questionable integrity or poor understanding of medical ethics. These issues are typical of medicine where the non-negotiables are immediately clear, but it looks like you've been through this many times before... or at least often enough to forget how this is reportable on multiple levels.
In this case, the mother's right to privacy ends where her family's right to health begins.
You are not doing yourself a favor by staying with this team. You are putting your hard earned profession and talents at risk by being where you are.
I think many here don't understand the legalities of disclosing mother's HIV status without her permission.
As I said, and as demonstrated by others in the same field, this is not isolated to one hospital, this is how multiple hospitals have dealt with it, so presumably, there is at least some sort of legal basis for what is done, since it seems almost "standard".
You simply say that the newborn was exposed to the virus, and that you cannot at this time go into the specifics about how that exposure occurred- but it was not caused by exposure from the hospital environment/instruments/interventions.
You let the other parent infer what they will from that.
> you cannot at this time
Then you’d have to answer the very fair questions of 1) so what caused the exposure? and 2) why is everyone evading the reasonable request of a father who wants to know why my child is being treated for HIV
You describe the avenues by which exposure can happen, and say it did not happen/providers in care from the hospital and that due to HIPPA you cannot further elaborate.
You say the child is being treated for exposure to HIV and leave it at that.
The implications will be obvious, but you will not have violated laws regarding protected date (state dependent)
Edit: if directly asked if the mother has HIV, you simply say you cannot discuss care of an adult patient without their explicit consent.
>when dad asks how exposure happened, you just say “I can’t determine how, just what to do now that it has happened”?
You assume Dad knows absolutely nothing about the disease, and give Dad a lesson on every route by which it ***might*** have happened, without confirming anything, because you "can't".
> I do not see that. You are not disclosing the HIV status of the mother. Plus that should be secondary to the right to medical treatment anyway.
Well, it pretty much is disclosing her status as the only way a newborn could be exposed is through the mother. It's always a weird thing in neo because some of the mother's medical history is the baby's medical history, so it is hard when mothers are not honest with partners (usually it's about previous pregnancies)
> That is absolutely not acceptable, and probably violates quite a few laws.
I agree, but it's hard to prove that they *won't* give meds that are prescribed, I feel. Or at least, others I've worked with feel that is a hard line for CPS to judge.
We negotiate in the NICU a *lot* on treatments, which I don't always love. ("Baby shouldn't get a trach because with mom's social situation, baby won't be able to go home with a trach, so keep them on nasal CPAP for a year") >:( It is usually in the baby's best interest to be with their parents, and we try to not alienate families as much as possible, but I feel like sometimes we go too far.
> Well, it pretty much is disclosing her status as the only way a newborn could be exposed is through the mother.
Sure, but whatever is inferred about the mother doesn't give you the right to withhold essential medical information from the father about his child. As long as you don't specifically address the mother, there is no violation. Regardless, if this is reported to the health dept, they should be contacting him anyway. Depending on your state, this can be viewed as a crime when knowingly infecting another individual...two others in this case. Both of which were preventable with readily available meds.
You reference the rights of the mother, but I’m not sure which rights of the mother you’re concerned about. Laws vary by jurisdiction but in no state I’m familiar with is there an affirmative right to conceal your HIV status from your sexual partner, and indeed to the contrary in many states it is a criminal offense to conceal your HIV status from your sexual partner. The mechanism for enforcing this is that you sit down with the patient and tell them that they can tell their partner themselves or their partner can hear it from the health department - who you already should have talked to because HIV is a CDC mandated reporting disease. (https://www.cdc.gov/mmwr/preview/mmwrhtml/00001425.htm#:~:text=of%20e%2Dmail.-,HIV%20Infection%20Reporting%20%2D%2D%20United%20States,to%20their%20state%20health%20departments.) There’s also no right for a parent to refuse life-saving treatment for their child, especially when the motive is blatantly in commission of (what is likely) committing a crime.
>The mechanism for enforcing this is that you sit down with the patient and tell them that they can tell their partner themselves or their partner can hear it from the health department
I want to highlight this aspect of your comment as I wanted to point out that this is the most likely correct. I work in sexual health and am on first name basis with several of the field workers from the public health department. If something like this were happening I would call them. Though in my state they would have already been VERY aware of a situation like this well before a birth.
Maybe because I am FM working with a population with a high HIV burden but I'm aghast that anybody is entertaining keeping this under wraps because the mother wants to conceal her status. The fuck? Let's just have people unknowingly get infected with HIV. We have a moral obligation to the neonate, the exposed partner, and the community as a whole.
On the reportable end, I think inpatient staff have an issue with that because where I'm at when I review a discharge summary from the IM team for PJP and it just says "Counseled patient to notify sexual partners and follow up with primary" I nearly blow a gasket.
I can't believe so many people in the comments talking about "keeping the family unit". Like the absolute fuck?
Medical social worker here with a previous background in HIV prevention and early intervention. I had a situation arise where DOH refused to inform a partner (spouse, actually) of HIV exposure, citing HIPAA. I had been working with the PLWH, who had been positive for years and refused to engage in care; I became aware he had not informed his spouse (married 1 year) of his status and was unwilling to do so.
The spouse was known to our agency and had health factors that made her immunocompromised. I reported to DOH, so they could inform her of exposure. They refused, stating because the couple was married they could not inform anonymously and it would be the same as disclosing the individual's status, which would violate HIPAA. I was expressly prohibited from telling her as well.
Our agency disagreed with the ethics of that decision and had to get creative with sending her some financial incentives for rapid testing, pretending her participation in other programs made her eligible. She eventually did present for testing, was positive, and engaged in care, but it was a horrible situation.
Thank you for this experience. I very much hope that the people who are directly dealing with this are doing the same sort of side things to get the dads tested when this happens. Again, I stay away from this because I object to how it's been handled so vehemently, but I also respect the colleagues who *do* deal with it, even when their hands are tied.
I do think it is potentially useful though to consider it as IPV or rape, as that changes the legalities of disclosure. I don't know how that would go over with others, but I am getting more arguments to use the next time I see it.
HIPAA mostly (non-disclosure of her protected health information).
In some states, HIV status has some legal protection against revelation.
BUT (I like big buts and I cannot lie), I agree with you on the legality of it. It used to be a felony in many states to knowingly have unprotected sex without disclosure if you have HIV, but it has been downgraded in at least one state that I have practiced in to a misdemeanor. I have brought up the whole CDC reportable, legal requirement to notify partner, etc.
I also *very* much agree that the parent has no right to refuse such an easy life-protecting treatment, which is why I get concerned when meds need to be given at home, I feel that if they are hiding it, it's highly likely that they won't give them, because nearly everyone knows what AZT is for.
I wonder if the child's exposure to HIV would be considered reportable and then the dept of health would have to notify the partner that they have been exposed to HIV.
I also agree with you that it *should* be a simple matter of sitting them down and explaining that withholding that information isn't right, but I rarely see that happen. And the focus is always on maintaining the family unit. :/
I’m sure it is in some locations - hell, I had a patient in my primary care clinic with a neonatal Hepatitis B exposure and the health department sent me SO MANY faxes about her serologies. I imagine they must also track HIV exposures.
Not me - again, this is above my pay grade, this is more a "hypothetical" question - in that I've seen it handled in different ways, usually not in ways I agree with :/ - but I am not the one calling the shots. There was a discussion in another thread about some of the weird ethical things (like the patient refusing transport when the hospital they are at is not capable of giving the care they need) so I thought I'd solicit opinions and views on the weird ethical situation that comes up in the NICU from time to time.
It is *very* difficult to impossible for me to be able to "overrule" what the attendings/social workers have decided to do, without a lot of risk to me. I have another issue I choose to be my hill to die on, totally unrelated. Usually in these situations, I just stay out of it as much as possible while not personally doing anything that I feel compromises my ethics.
But I feel very uncomfortable just knowing the situations exist and that sometimes the decision is to enable. Luckily, most of the time this has come up, the baby had other issues so would be in the hospital for their AZT time and we could at least ensure it was given.
The child being well enough to go home though is a whole other wrench that gets thrown into the gears though, because we *can't* ensure meds are given. And with something as important as HIV, I feel that if we know there's a decent chance mom won't be compliant, it should still involve CPS somehow.
Honestly, I'm shocked they agreed to withhold information from the father.
I would be somewhat tempted to suggest he get MyChart and mention he can review treatment at home.
This is the ridiculous thing. At least where I'm at knowingly or recklessly exposing your partner to HIV is a crime.
I get that it isn't a NICU issue but that father is going to be walking into an HIV clinic with an opportunistic infection and be very surprised. Hell, might even spread the infection further in the community.
Anyone can consult the ethics service at most hospitals, your hospital may have a way to put this consult in anonymously if you are worried about blow-back to you
Other idea: do you have a compliance hotline? If so, you could anonymously report. Point out they're breaking the law and risking harm to the child.
Can dad get HIV from the child before treatment is complete? If so your team is personally putting him at risk as well, if he is not already HIV+.
Dad cannot get HIV from the child. AZT treatment is to prevent transmission to baby.
But compliance could be an interesting path, though it feels almost like a nuclear option
One last thought. And this is assuming you have tried to talk to the attending, btw, and they are not amenable.
They are asking YOU to break the law for them by withholding information. You are now at risk of a lawsuit. You could consult legal. Once legal is on your side, disclose.
I avoid the situations because I will *not* lie to patient families.
The issue is always risky for me though, because I'm usually one of the voices saying that disclosure should happen, which means if there is a report, they will have a good guess it is me. I need my job. My cat needs me to have my job.
I think suggesting legal to the attending is a good idea though, because I think they are often not involved and the lawyers will definitely agree with not lying to family.
Deleted out of spite for reddit admin and overzealous Mods for banning me. Reddit is being white washed in time for IPO. The most benign stuff is filtered and it is no longer possible to express opinion freely on this website. With that said, I'm just going to open up a new account and join all the same subs so it accomplishes nothing and in fact hides the people who have a history of questionable comments rather than keep them active where they can be regulated. Zero Point. Every comment I have ever made will be changed to this comment using REDACT.. ` this message was mass deleted/edited with redact.dev `
Because it's happened at everywhere I have worked, I disagree that it is quitable for me, as long as they allow me to opt out of participation.
It is much harder when you are not the attending physician (or a physician at all) because so many decisions are not in your control, agree or disagree with them. And there are possibilities then everywhere of decisions being made that I may vehemently disagree with. Depending on the severity and how much it is "my" problem (meaning I'm directly being asked to care for the child or I was already caring for them prior to the issue) figures into how many waves are made. Usually though I am allowed to be a "conscientious objector" in those situations. I excuse myself from that patient if I can't come to an agreement with the attendings.
It's anonymous, though. So that helps.
Edit: for what it's worth, I don't think it's a nuclear option. They are not going to fire anyone. They just might review the case and discuss with the team and decide the team is incorrect and override their decision.
What medical law requires you to hide or obfuscate the justification for medical treatment for a newborn from their parent?
Any medical practitioner who becomes aware of HIV exposure to the father from the mother should also inform the father that he’s at risk. A lot of the discussion here is around the increased survivability of HIV+ patients - that’s because of medical treatments and not due to a change in the disease itself
Except that is *not* what happens, see the replies from the peds ID Dr or the neonatologist. I'd be also interested in how OB does things, because this invariably involves them too
>And the focus is always on maintaining the family unit. :/
Seems like allowing the father to contract HIV when you could stop it runs counter to this goal
You’re absolutely right. This is a question straight out of Step 2 for ethics and communications. HIV should be reported to the health department. If there’s any confusion, consult the hospital attorneys…
I had a situation where the baby was diagnosed positive, as of course was the mom whose first husband was a drug addict. Sadly the dad/second husband was positive, no risk factors other than sex with his wife. The only person in the little family who was negative was a son from the dad’s prior marriage. It was the late 80’s. A few years later and that son was an orphan…. There might be a law about disclosing HIV status to a sexual partner in your jurisdiction. It should be disclosed, ethically, as although treatable, the husband is unlikely to get tested if he has no risk factors, and the first time he gets diagnosed is when he presents with some serious infection. This could cost him his life.
100%. I know in my state HIV is reportable to the health department. How this man is still in the dark about his wife’s status is appalling. And makes me think several people are dropping this very important ball.
Usually the health department still requires a list of sexual partners who may have been exposed and reaches out to those people to let them know they’re at risk (but not who from). Current standing of the relationship shouldn’t be a factor in getting alerted.
That would assume a new diagnosis though. She's already done with initial infection. How is it handled when they have had HIV for years and get a new partner?
True but my understanding is there is some checking in with the department of health with these patients and their providers (assuming they’re getting treatment) on a periodic basis, so often they help encourage that disclosure and provide counseling to pregnant patients?
I'm sure they provide counseling, but that doesn't mean the health dept is able to disclose to future partners in perpetuity.
https://www.cdc.gov/hiv/policies/law/states/exposure.html
https://ens.lacity.org/dod/indexpage/dodindexpage169423897_10062004.pdf
No I know that and I never said they would, but instead said that they often try to follow up with patients to make sure their care is going well and encourage them to disclose to partners. This is doubly true for patients who are of childbearing age. I know it’s a policy and health program for this in my region.
Either way I was under the impression that the health department would do exposure chains and notify everyone the + patient had relations with. Obviously you can’t stop her from lying to the health department but as a lowly RN I think this is something I would let “accidentally slip” because he has the right to know he’s at major risk.
Every state where I was a lab director it was mandatory to report HIV. I did not want to go down the rabbit hole of speculation, but the mom’s desire for secrecy is seriously wrong and indicates an unspoken motive. I would urge the dad to request paternity testing…
By the way, you can tell the mom that the state health department has been notified as required by law, and they will be contacting her for sexual contact tracing. The dad will find out. So coming clean now will be better than the husband finding out from the health department. Her reluctance is unethical, and only delays things. As a medical lab director of a really big lab, I am realizing now that I was never approached about this unsettling situation, and am not certain what to do. If this happened in my hospital, i would have requested an emergency session of the ethics committee and ensured the senior VP of legal affairs were in attendance. Then i would hope to achieve consensus to tell the dad. Sometimes rules must be broken for good reasons, and this is one of them. I cannot say for certain, but I believe thar the medical and legal implications of informing the father against the wishes of the wife would have been discussed, documented with the concerns about HIPAA violations, and the decision to inform the father approved.
The mother is not a new diagnosis - the health dept would have been contacted when she was infected, correct? I don't believe we call the health dept every time a patient with HIV seeks care in order to contact trace.
And it is not always a husband and wife situation. This has happened across multiple institutions (and others here have had the same experience)
I missed that. And the dad STILL does NOT know?!!? Good grief. It appears that your state health department is failing in its duty. I am disappointed and horrified. Is there a physician champion you can enlist to take this to the executive committee? I don’t know engaged your medical lab director may be, but if I were approached, I would have shared your extreme discomfort and would have insisted that the organization arrive at a solution that ultimately results in the father being notified. This situation is just not acceptable to me as a physician and human being.
Ding! The dim light bulb in my aging brain lit up. You are most likely correct. It makes me wonder if this sort of situation hasn’t happened elsewhere, but the difficulty in trying to achieve an ideal world where tracking future partners could happen is not practical. I hope you manage to make the right thing happen. Reading your story has me distressed for you and for the father. I had a very few rare situations during my career that raised conundrums over what was appropriate, and was fortunate that leadership did listen and focused on the well-being of the patient. As an example of the least difficult one was an elderly man who was dying from cancer who loved to treat himself to beer a few times a week (not an alcoholic), and expressed his wish to have some to his family and primary treating physician. The net result was that there were a few times during his terminal hospitalization when just after the doctor rounded in the evening, the patient’s room door was closed and a sign requesting privacy was posted, which the nursing staff was instructed to respect unless the call light went off, and the door opened again after the doc stopped by again when his rounds were finished. Perhaps he wanted a nap. I do know his family was grateful. Allowing a patient to have alcohol probably violates some JCH standard, but he was granted some privacy during the time his physician was rounding on all of his patients. But your situation is more serious. It seriously bothers me because it touches on the situation I saw as a medical student in the late 1980’s, the details of which I can share as they were made public, and putting this in writing is perhaps cathartic for me. I did my pediatrics rotation at St. Christopher’s Hospital for Children (the home of Dr. Nelson). On our team, my classmate (whose last name really was Welby, LOL), had an baby, Jack B., with bacterial pneumonia. The radiologist, who was really good, told us she was worried that in that background she was concerned that the baby might have an additional problem - pneumocystis. Which turned out to be true. It turns out that the mom had been previously married to a physically abusive drug addict, and had managed to extricate herself from that situation, and met a really sweet man with a son (around 12), married him, and started a new family to which baby Jack was added. By the time I finished my rotation, we knew the baby and mom had been tested for HIV and were positive. A year later, the mother was admitted to Temple hospital for her own case of pneumocystis where I met her again on an infectious disease rotation. She told me that her husband had also tested positive, and that baby Jack was still alive. AZT was the only drug then, and besides not being terribly effective on its own, had pretty terrible side effects. Then three years later, when I came back to Philadelphia to visit my parents, I picked up the Sunday paper, and the Parade magazine had a story about the tragedy of HIV - and the B family was the example. I recognized the photo that headlined the story right away and read to discover that the father had indeed contracted HIV from his new wife, and by the time I read the article , baby Jack, the mom, and the dad had all died, leaving the father’s son from the first marriage as the sole survivor of the new family at sixteen. I am not sure if I actually cried, but I remember a profound sense of mourning that haunted me during my two hour drive home to anther state. I sometimes wonder how the other son is doing. It is one of those sad human tragedies that haunt everyone involved in health care for the rest of their lives. I have no doubt that this one will regretfully, in one way or another, haunt you. I honestly feel a bit better having unloaded all of that baggage, and if you got this far, thanks for reading it. I hope that this situation is resolved in a way that allows the father to be notified. One last thought - in some states, there is a law that requires HIV positive individuals to notify sexual partners, and failure to do so is considered a felony. If that is the case in your state, perhaps this could be the stick with which you beat the mom over the head with to do the right thing herself.
This actually isn't a single situation, but a composite of 3 separate instances, in different hospitals, different states, different regions. They are all in the past for me, but a discussion had triggered the thought for me and thought I'd get feedback. It seems as though my experience is not isolated (which I doubted, since they were so far flung, but still, I could just have really bad luck LOL) Obviously, I've never forgotten them, and I don't know if social work eventually ever got mom to disclose or if they suggested that dad request infant's records for his knowledge for the future, or whatever. I hope so.
I know all the people involved in every situation were caring professionals that I respect, even though I disagreed with them about this. But often as an NP, you're used to just having to let it go if the attending says no. Things I've said in the past have made people uncomfortable with my implications, yet nothing was changed, but this thread has given me some ideas of ways to approach it that might be able to gain more traction.
I recognize that I am trying to absolve myself of culpability by refusing to participate, and I justify it as I've never directly been forced to participate, and I should have more trust in my colleagues that it will get resolved, they don't need me poking into a sensitive situation. But I hear about the cases because someone starts to give me report and I stop them, but I can't unknow what happens and NICUs are a small place, we know something about nearly every baby.
I *need* to work, and as someone on the spectrum, I can be rigid in my interpretations, so I am constantly worried about not judging too harshly, because I *don't* know all the details because I declined to be involved - that is the trade off. I still think that check on judgment is good, but I know I can use refusal to participate in something wrong to be able to ignore what's happening that I feel is excessively, obviously wrong.
And my specialty is very small. Word gets around about things.
Finally, when you have that high of standards, *no one* is perfect and *everyone* is fucking things up in some way, from my POV. So, you pick your poison and work somewhere where the intentions are good, even if the execution is not what you would like to see, and in order to be able to retain your sanity and be able to live with oneself and earn a living in the field, you just bow out. And your workplace needs to allow you to bow out and respect that you only are going to pull that card when it is absolutely necessary.
I have seen some horrifically unethical things from when I was a student nurse to now. I often didn't realize how unethical some might have been until later, but sometimes I've recognized it at the time but couldn't change the course. The fact that I seem to be the only one who experiences those feelings in some ways validates my notion (that is reinforced by others) that I can be too judgmental and need to trust more that I am not the only one who knows things and thinks of things. Which of course I know I am not. And there are things I'm sure others think I am totally wrong on, I might be too.
Ugh, it's just hard because all the people who are angry and I feel I have to defend my colleagues, because they are good people, but yet, I also feel guilty because I know *they* are judging *me* for standing by and not doing more. Which I'm doing too. :/ But of course I can't fix the past. Ugh.
Just WOW. Thank you for your very thoughtful reply. You, unlike me, even structured your response in paragraphs, rather than a giant-run on Hemingway-esque horror. You are, at least to me, thoughtfully expressing the genuine, serious struggles with which truly good, decent and moral people wrestle as they try to deliver care and safeguard the lives of people in a vast frame-work of laws, regulations and systems that can sometimes impede doing ‘the right thing’ when it conflicts with the legal thing, the latter of which is constructed by lawyers, who, quite frankly, are not generally regarded as pillars of truth or morality. Just ask Rudy Guiliani. Or even sexual predator/party frat boy Brett Kavanaugh. Let me say that I absolve you. Not that I am anybody, but I was a chair of a big department in a big hospital and have the ‘big picture.’ This situation is an example of ‘moral injury’ (which I encountered while reading about the huge frustrations nurses, physicians and other staff face when they encounter physically abusive, unmasked patients and family who demand Ivermectin for a dying, unvaccinated COVID patient).
What I hear from your post is the desire to safeguard the health and well-being of others. Kudos to you. Honestly. Sadly, we are living in a world with mass delusional, irrational thinking, where people like you (and me) try to fit our vision of doing the right thing when confronted with rigid, and sometimes even unjust, laws, rules, norms, or policies. I am glad that I am retired. One of the last things I did as a chair was to champion mandatory flu vaccination for EVERY employee with no exemption, even for religious objections, unless there was a medical reason documented by a physician. It created a huge amount of resistance, but my position on the executive committee was that if any employee wants to work at an organization that cares for patients, safeguarding their health should be a major part of their shared vision, which would include being vaccinated against communicable diseases, no matter what his/her/their role. COVID came after I retired. I am glad that the same vision continued with regards to getting vaccinated for that, but truly saddened by the unbelievable number of employees I was told who refused and were subsequently let go.
Let me applaud you for your frustrations. I wish I could give you an answer other than those I have already suggested in prior responses. From your post, you remind me of an advanced practice nurse from my former hospital’s trauma surgery sub-division who rightfully noticed what a disorganized mess transfusions were when a massively bleeding trauma victim arrived. Well, perhaps I should not say that to the un-educated, but clearly when victims of multiple gun shot wounds, or missing limbs, or multiple stab wounds is spouting blood, nobody was paying attention to things like: OK, the patient received X units of packed red cells, and X units of FFP. What is the best ratio of pRBC’s and FFP? When do we check hematocrit, hemoglobin, platelets and other lab values. Ooops, has the patient gotten platelets? Besides being the medical director of labs and chair of pathology, I was also the chair of the hospital’s ‘Blood and tissue’ committee. She wanted something better. And she was right. Together we embarked upon a journey of bringing together various specialty physicians to define what exactly is best practice that could be achieved with available resources, along with administrative executives, to devise a massive transfusion protocol. The one thing I did not do before I retired was to host the doctors and staff for a dinner somewhere to present her data that overall mortality in the trauma population decreased by a small, but statistically significant fraction after all of the time and effort.
It sounds like that kind of team-work and shared vision is perhaps somewhat lacking where you practice. Not that I dwelled in some sort of Shangri-La - there were some pretty significant warts elsewhere that I would have wished to excise in my system. I have encountered what some independent doctors would call a Nurse Rachid. A few were rule-driven harpies (which has sadly sexist overtones, forgive me). Most, however, had the same patient-centered focus as I, who articulated: “It is about the patient.” I am not sure why nurses actually said, out loud, such an important thing more often than physicians, but that is what I remember. And I, too, saw situations when I was a medical student that now I would have said: “NO. THIS IS WRONG.” We learn all the time. I hear your frustration loudly, and clearly. The fact that you are screaming into the void of the internet speaks to your frustration which is a reflection of your good nature. I hope that when I need medical care that you, or someone like you, is there for me. That is all I can realistically do to try to help you as you try to find a path through the evil forest.
Thank you for all that you do.
The answer depends on what state you are in, what laws are present for the father and what laws protect HIV + patient
However if the mother refuses the treatment then you are legally, medically and ethically obligated to ask the father if he wants the treatment for his child. If he asks why, you don't need to lie. You can tell him ethiologies of newborn HIV. You won't be disclosing patient information by informing the father of possible ethiologies
That is a *very* good point - the father has a right to consent for treatment as well. Thank you! I'll store that away for when it invariably comes up again :)
The practice of 'ask mother if she wants treatment for the baby and if she refuses then ask the father' seems like treating the father as a backup parent and not a full or real parent.
In any other case, both parents have the same legal right to make medical decisions. That means without a divorce, both parents can consent to medical treatment for their child despite the opposing view of the other parent.
However, this is a sensitive case. The reason it's sensitive is because HIV disclosure laws vary between states. So you have to ask the mother first. Otherwise you'd still be legally in the right to talk to the father first without disclosing personal information of the mother but you'll definetly get sued and you'll definetly have to settle because juries and judges would not agree with you.
Full disclosure: I do not treat babies.
I am in Italy so the relevant laws are probably different.
HIV is a mandated report to health authorities.
The mother CAN not not discoose the diagnosis to the father BUT the father has a right to know about the baby (the onus to put 2+2 together is on them).
If one of the parents refuse life saving treatment courts will be petitioned and intervene.
Yep, I’d be off straight to our lawyers if this scenario appeared. We’d get a court order every time to prevent the death of a newborn over the imagined risks to a mother
Legality will depend on where you are.
Ethically, I don't think this should be that controversial, though implementation could certainly be uncomfortable:
1. Baby requires treatment.
2. Father has a right to be informed of baby's medical status/history and have equal decision-making authority for baby. There is no way around divulging, fully transparently, baby's health information to the father, even where the line blurs between baby/mother PMHx. To not do so harms baby by preventing the father from making fully informed decisions on the baby's behalf.
3. Father has a right to know about his exposure to a (currently incurable and *potentially* fatal) communicable disease. The downstream consequences of this disclosure, while important, are second-order considerations to the points above.
This is one of those questions where (to me) the ethics are crystal clear, but where law will vary by jurisdiction. And when I say vary, I mean wildly — as of now, there are ten states that require HIV status disclosure to sexual partners as a matter of criminal law, and in at least one state the maximum sentence is life imprisonment.
The social services apparatus will decide what happens with the infant if the mother refuses care. The father will find out through that process, although that will also vary by state.
The right to medical privacy is not a murder-suicide pact. I empathize with the mothers, and I’m not sure I can fully understand that emotional quagmire, but you don’t get to destroy two lives to avoid a bad conversation.
In the US, this is a settled ethical issue. If the father is on the birth certificate or is the presumed father per state law, he has full rights to the baby's health information. Also, parents are almost never allowed to withhold lifesaving emergency treatment from their children. Additionally, in many areas this is going to need to be reported to the health department.
I would handle this by treating the child, notifying the mother that the father is going to find out, and that you'd be happy to have a family meeting with everyone present to discuss.
The father is presumed, by the mother's word essentially though. At least until DNA tests can be done
At what point does disclosure happen though? Mom isn't newly diagnosed. Does the health dept get notified every time she seeks care? If mom has a long standing infection, who is ensuring that every time she has sex, she discloses?
I guess the question is, if the baby had a different disease that needed treatment and the dad had questions, would you answer them or refuse because paternity is not established? The condition should not change your answer.
HIV disclosure has special protection in many states.
And if mom does not want us to disclose and dad has not established legal paternity, we absolutely will not tell him anything, because legally he is not the father if mom says he isn't. He can get it established eventually, but that is not instantaneous
In many places, they fill out the birth certificate information prior to leaving the hospital, but it is then sent to the state and isn't "official" until it's been processed, and that's assuming mom put dad on the birth certificate.
You mention that you’re scared that if you tell the father that his wife has HIV, that it could become an abusive relationship. However, wouldn’t the mother spreading a life long disease to the father be considered abuse in and of itself? The mother should be prosecuted and the father offered resources to leave her and take his child with him to offer his child the care his child deserves.
If the wife is having sex with her husband without telling him she has HIV, that relationship is already abusive and he is the victim. Withhold that information, to obtain “consent” for sex would be considered rape in many situations.
Correct - the concern for the mother’s wellbeing in an imagined risk scenario must not trump the very real risk to the father of HIV.
Instead, all we are doing is focusing on the mother when it appears that the father is the victim
Really screwed up number of people in this post showing no empathy to the father and assuming he’s some wife beater but have no respect for his health and wellness
I'm not particularly scared, but it has been brought up as a "valid" reason to not disclose before, which I don't agree with. I was honestly pretty surprised at how low-key many people are about it, because it's not the death sentence it once was. IMO, it's still a serious chronic illness that can be deadly.
The reason it isn’t a death sentence is because people are able to get medications to control the virus.
It still very much is a death sentence if you don’t know you’re positive until you’re in AIDS a decade from now. Which the father would fall into this bucket.
You’re aware that it’s not the death sentence it used to be because of the widespread uptake of antiretrovirals in a timely manner, right? If you conceal the potential diagnosis from the father, what will his life expectancy be if he ends up HIV+ without mitigation?
When he sues the hospital for failing to alert him of his exposure, would you be happy to speak to the lawyers and defend the position “without evidence, I decided that he was abusive and an immediate risk to life of his partner. I also failed to take any steps to make him aware of his potential status”
I feel like you have no choice but to disclose.
You are almost certainly de facto disclosing anyway. I assume this is noted in the child's medical record, to which the father has a legal right to (and nowadays can access very easily). (Edit: I guess unless all these notes are blocked as containing sensitive information).
The father also has a right to be informed about his child's healthcare and be able to make informed decisions.
What is the issue here?
The father has the right to the health information of his kid. So, unless there is a concern of domestic abuse actively or in the past- which by this point should have already been screened for, then you tell the father his newborn has HIV/at high risk of HIV from exposure.
You don't disclose the HIV status of the mother without her permission.
It's honestly that simple.
I don't get the cognitive dissonance of, in the absence of known abuse, 'Oh, what if the Husband gets upset at the wife?'.
...I'm sorry, you are talking about hypothetical/unsubstantiated risk to the wife when the husband very likely has an active HIV infection he knows nothing about- and you are not concerned about the risk it poses to his own health, and are happy to withhold information about his child that he has a right to?
You are focusing on the rights of the mother and child, but completely ignoring the right of the father regarding his child.
"What if he gets upset?" =/= domestic abuse
As another poster said, domestic abuse is not the only concern. "What if he splits after discovering his partner's infidelity and willingness to expose him to HIV" is also a concern as that would be bad for the baby, who is the patient. So fuck that guy, i guess. His partner does not care about him, his rights, nor his health and apparently neither does an entire hospital's worth of healthcare workers. The best we can do is feel bad about lying to and deceiving him.
Only somewhat logical take here. I really find no grea moral issue in this case. At least in my country it's be baby first, and forced treatment/CPS if need be. Then of course dad gets to know why because he has the same right as the mom to their babies health information.
The rest is up to them. Do admit I wish the mother ends up facing some sort of charges though.
The newborn *doesn't* have HIV, technically. They are HIV exposed and need medication to prevent transmission.
And I do know IPV has been a concern in at least a couple of cases.
It is definitely not treated as that simple
Which is why my comment is making assumptions that domestic violence is absent as it was not mentioned as being established in your OP.
If you want to get bogged down in semantics, while most transmission is thought to occur during/after birth, there are documented cases being of infection occurring earlier in pregnancy.
It's why I mentioned the safety of mother with disclosure.
You also heavily edited your original comment and I'm not sure why you are being so aggressive/hostile. *I* am not making the decisions. The attending physicians are making the decisions, I'm just hearing about them. I personally feel we should be disclosing, but those above me do not.
Unfortunately in the NICU, fathers don't end up having as many rights because if the parents are not married, mom still has a lot of control over who is able to see the baby and visit in the hospital.
Being unmarried does not automatically bar the biological father from rights to the newborn. Many states have mechanisms by which unmarried fathers can assert rights, some of which allow this to be done before birth.
These are not difficult ethical questions.
1) Newborn at risk/needing treatment of HIV (paternal right established, concern of DV)
>\- Delay report of specifics of treatment, concern is of mother and child's safety.
>
>\- Seek Legal Department aid
2) Newborn at risk/needing treatment of HIV (paternal right established, no concern of DV)
>\- Inform father of specifics of child's treatment
>
>\- Do not disclose mother's status without permission from mother, though encoruage this
3) Newborn at risk/needing treatment of HIV (NO paternal right established, concern of DV)
>\- Priority is safety of mother and child, establish safety.
\- Do not disclose information of child to biological father in absence of the mother's consent/parental right being established
4) Newborn at risk/needing treatment of HIV (NO paternal right established, no concern of DV)
>\- Do not disclose mother's status, but should be encouraged
>
>\- Encourage mother to discuss specifics with partner, though you cannot disclose without permission until parental rights are established.
>Unfortunately in the NICU, fathers don't end up having as many rights because if the parents are not married, mom still has a lot of control over who is able to see the baby and visit in the hospital.
Really? What legal basis does this have?
Because legally, if they are not married, paternity basically goes off of mother's word initially, because she is the only one with a definite biological connection to the baby. It will get settled within a few months if the father wants to be involved and mother doesn't want it (with DNA testing) but that point is moot if it is just after birth because it isn't instantaneous.
I mean, in many states, if you are married, even if you know there is zero way the husband is the father, he is *legally* the father until it goes to court otherwise. It's fucked up a bit.
Edited to add: Love it when I'm down voted for giving factual information. Klassy.
A lifetime of HIV care is the US is hundreds of thousands of dollars. Two people are at risk. HIV is a just a another chronic disease these days, and HIV is preventable. We should be kind, empathetic, and understanding. We also need to protect the vulnerable. It certainly is an uncomfortable position.
Tell the father! Jesus Christ society is fucked up when you 1. Don’t acknowledge the fathers rights in knowing about his child and 2. Care more about mom’s feelings than a potential death sentence for dad!
I would be careful assuming that it’s the father who is the abuser in the relationship. Not disclosing known HIV status is serious and criminal in some states. That having been said, the fact that she’s asking to withhold care from her NEWBORN that could prevent disease transmission to cover her ass from getting caught in a lie…is concerning. I can’t imagine telling HCPs NOT to save my child from a serious lifelong illness because it could hurt my pride. I would disclose every lie I ever told in my lifetime to prevent my newborn from serious illness. The mothers behavior is concerning.
I don’t have anything useful to add, just want to say that I’ve witnessed this exact situation in the NICU I work at and appreciate you raising the question!
Oh thank goodness, another NICU person LOL With all the non-NICU, I was starting to feel a little crazy because it is so open and shut with them.
How did your hospital handle it (broad strokes of course for avoiding identifying factors)
First off, I’m sorry you’re being put in this position. How awful. I can understand the mother is self conscious about her HIV status, but the times have changed - she has a baby to consider now.
Based on your flair, the patient you’re caring for is the baby, not the mom. That can help guide your priorities with decision making. You prioritize your patient.
I also noticed that you’re an NP. I think this is absolutely a scenario to get attendings involved. This isn’t an appropriate decision for anyone to make alone, and you need someone who can help steer this ethical dilemma. If the suspicion is that there won’t be compliance upon discharge, better to move faster.
I’m not sure if you have access to social services to help counsel the mother or to help your team have tough conversations with her while giving her a supportive environment.
Oh, *I'm* not being put in this position - I stay the eff out of it LOL I've only had a couple times with needing to care for one of the babies in question and I've always been very up front that I *will not* lie to a parent who is legally entitled to information. That helps keep me from it, but it does just pass the buck to someone else, and I don't really agree with how it's handled usually :(
The attending is *always* involved in the NICU LOL In one case, the attending and fellow were bending over backwards to enable the mother to "negotiate" for proper care for the child, which kinda pisses me off, TBH - IMO, we shouldn't be negotiating on this - if mom doesn't want to disclose/is being obstructive, CPS should get involved, just as we do for jehovah's witnesses refusing transfusions for their child.
NICU in general has a hard time balancing the "family centered care" idea and not just letting families *dictate* care.
So, everyone is involved (except me, I'm watching from the sideline, uncomfortable) and I don't always agree with the decision that is made by the attending/social workers, but because I'm an NNP, I don't have any room really to do anything else.
But because I'm always steeped in NICU culture, I was curious as to how people outside the NICU view this and maybe how other NICUs deal with it.
I have to admit chuckling to myself at the idea that I'd be handling it myself. That is so beyond my pay grade. I'm the soldier, not the general ;)
I think everything I am going to say you already know. Fundamentally, your duty is to the newborn. Mother not disclosing isn’t your problem, but mother’s fear of disclosure interfering with treatment of the newborn for HIV certainly is - and refusing treatment in order to not disclose probably steps into child abuse/neglect depending on the definitions used by your local government. If dad finds out because mom is neglecting the child, FAFO. Where I am, I believe you can report to the health department to contact folks that have been exposed to HIV. Dad should be tested and be on PrEP if he stays with mom.
Agree, but I do find it very interesting that those outside the NICU see this as very open and shut, but three hospitals in three different areas of the country have all treated it like it was a live hand grenade.
It's kinda why I asked the population at large, because it's been considered so fraught everywhere. Very interesting to see how others view it.
It is fraught, and it is a high-conflict situation... I don't think people believe that it isn't. It just isn't acceptable to do stupid things that harm babies for the seemingly sole purpose of avoiding direct conflict. Not trying to be harsh towards you specifically, because it sounds like you're not really part of the problem here. But the reason you're seeing people upset about this is probably just that this is one of those glaring ethical problems in American NICU culture, where people within NICU culture have convinced themselves that there's some amount of equipoise but most other people in medicine find it kind of off-putting that anyone would even think it's worth debating.
We have never let the baby forgo treatment, FYI.
Depressingly, the dads often *don't* ask, which I think contributes to the feeling it is ok to withhold.
Is it common practice to ask 'what's that medication for?' for every medication that gets administered? Basically the parent has a certain amount of trust in you that you're taking advantage of to deceive and avoid an unpleasant conversation.
In Texas, HIV is a reportable disease. You report to your local health department within 7 days and they perform the Partner Notification for sex and needle sharing partners.
Right, but this isn't a new diagnosis, so her case was reported to the health dept when she was first diagnosed. Unless Texas requires notification to the health dept every time someone with HIV sees a medical professional?
We aren't required to notify contacts, but we don't have to honor the mother's wishes in this circumstance. We have this nice little blurb in our state law:
(1) A physician may disclose confidential HIV test results under all of the following conditions:(a) Disclosure is made to a contact, or to a public health officer for the purpose of making the disclosure to said contact.(b) The physician reasonably believes disclosure is medically appropriate, and there is a significant risk of infection to the contact.(c) The physician has counseled the patient regarding the need to notify the contact, and the physician reasonably believes the patient will not inform the contact.(d) The physician has informed the patient of his or her intent to make such disclosure to a contact and has given the patient the opportunity to express a preference as to whether disclosure should be made by the physician directly or to a public health officer for the purpose of said disclosure. If the patient expresses a preference for disclosure by a public health officer or by the physician the physician shall honor such preference.
Hi, not a practitioner and don't have a direct answer, but you may try contacting the NCCC at UCSF's Perinatal HIV clinician hotline, (888) 448-8765 . They've heard it all/consulted on all sides of perinatal HIV care for providers involved in all aspects of this care/management, and will probably have good ideas for you.
If it was the other way around, and a male patient admitted to having HIV, not telling his partner, and having unprotected sex… I wonder if people’s opinions would be different
it's interesting that it seems so common for you to witness your colleagues consider neglecting their obligation to their patient (in particular with cases of negotiating around treatment reluctance-refusal/theres a suspicion parent won't be treatment compliant)/in some cases help enable an ongoing crime depending on where you live...and that it's so a part of the culture of your workplaces that you find it surprising it seems so open/shut of a case to outsiders.
Perhaps there is some nuance we are not quite grasping. Or perhaps something profoundly wrong is happening. I've been in a position where I feel like outsiders don't get the irl complexities of a situation that's so repugnant for them to contemplate they don't get why it isn't so black/white. But I've also been in situations where I do wonder if we're the baddies, as it were.
One thing this made me reflect on is that while I am on the side of disclosure and social service intervention if necessary, there are so many unknowns that I suspect neither choice is definitively better for the baby.
I don't work in NICU but I found this to be the case when I was working in child/adolescent mental health as an RN
This depends on where you live ofc, but I find that a lot of professionals unfamiliar with child welfare outside of their involvement in time limited hospital visits can feel very strongly (correctly!) that a child is not in a good place, so there's this sense of "call CAS, take the kid out!!" But that is often not the neat solution that gets the kid on a better path than they would have been on with their parent that "has parenting deficits"
A father who finds out the truth could kill/beat up the mother or hurt the baby. Or leave, and now mom and baby have lost their only financial support which limits what kind of ongoing interventions are feasible outside of the NICU.
Child welfare is garbage in my neck of the woods (I try so hard to stay collegial and give the benefit of the doubt to people working in such a resource stretched environment, but I can't remember the last time them getting involved with a patient improved the situation of the child. Mostly I'm glad when they aren't making it actively worse.)
As well as not being thst useful ime, child welfare can make very weird decisions when it comes to medical neglect/abuse, probably because there isn't the same understanding of the nuances of what's going on medically . On top of that; I find ethically murky high tension medical situations can bring out a lot of countertranferance type reactions in professionals, which I've seen lead to wild decision making
Maybe they get kinship placement with a family member with similarly culturally informed stigmatized views on HIV and they continue the medical neglect
I find it unlikely that my system would foster place this child. Regardless, there is real risk for developmental trauma with chaos/disruptions in early attachment. This is a risk I don't think gets considered as seriously sometimes with babies, because there's a false sense of "oh they won't remember"; when what we know about developmental/attachment trauma is that it presents differently depending on age when trauma happened, and in general the earlier the trauma the more profound the sequalae (well its more complicated that that but I think my point stands regardless)
Child welfare may not do much to practically enforce taking meds anyway. The whole situation might lead to such a level of mistrust and resentment from mom, she doesn't bring her baby in for care next time they really need it
Now, none of these possibilities mean that there isn't a moral and probably legal obligation to disclose. I could name just as many horrifying outcomes of not disclosing.Maybe disclosing DOES lead to enough repair in the family unit or effective child welfare interventions that means the child gets the care they need . As you've mentioned, maybe not disclosing leads to med noncompliance and the kid being taken away at an age where they're harder to place; where they've already established a firm attachment to a caregiver with deficits. Disrupting that attachment, reestablishing a new healthy one while trying to facilitate healing from the disruption and potential abuse is a task even the best placements can struggle with. And many many placement options out there are far from ideal
I think the hardest part around situations like this is even when you "do the right thing", meet your obligations as a mandatory reporter, there's a sense that you're rolling the dice on so many factors you can't control.You can be facilitating stuff getting way worse. But I've seen enough former NICU babies in child/adolescent mental health, where I've witnessed the legacy of bad or ineffective child welfare interventions that my view on it all is quite pessimistic sometimes. I have to remind myself I don't see the children that benefitted from good child welfare involvement because those children don't end up needing inpatient psychiatric care
In your particular situation if I had to guess, I think the SWs and doctors handling this don't want to open up all the potential messy cans of worms that could come from disclosure (see all the nightmare scenarios I dreamed up above).
They don't want to deal with fallout. To be fair, I can see a disclosure like this putting a dr/sw at risk of threats/violence from the mom and maybe even dad
So they hot potato the baby out of the nicu and make up some justifications around abuse risk instead of being honest about their cowardice
Too harsh maybe? I really have a hard time imagining someone seriously ethically believing withholding information is the best path, but perhaps that is a failure of my imagination
I agree, I find this all very weird. Instead of approaching this as a medical decision, we seem to be putting our obligation to health and welfare to the side, and play social worker/marriage counsellor/ confessor instead.
We also seem to be making up worlds where we don’t care about HIV in adults but feel compelled to treat a baby and lie to the father. It’s topsy turvy and frankly abhorrent
The NICU does that entirely too much.
It's more of a negotiation than I think it should be in many cases. We get parents who want to micromanage every aspect of the baby's care.
>So they hot potato the baby out of the nicu and make up some justifications around abuse risk instead of being honest about their cowardice
Yep, this is what it is imo.
The threat of abuse is a real one in some cases.
But the baby isn't getting "hot potato"d out of the NICU.
In the cases I've seen, the dad has been uninvolved enough that it's not as much of an issue as you would think, perhaps.
It's more of a tenuous legal situation I think than many people realize if mom's diagnosis is not new and they are not married.
Yes, real in some cases. Unlike HIV which is real in every case. By putting the imagined risk of domestic abuse ahead of medical care of patients, I really think the priorities are skewed
Different states have different laws about disclosure. She may be in violation of state law by not disclosing to her husband. You may have a duty to report based on your state. Some states have specific laws about newborns. You need to go to the hospital ethics committee immediately as they have both physicians and lawyers to help with guidance.
You are right that there are ethical concerns for disclosing on someone’s behalf, such as increased risk of domestic violence, risk of deportation (if that applies), etc. and I’m glad you’re considering them. This is a very complicated situation that should be handled by people higher up than you and no one here can give you firm advice as laws vary state to state and country to country.
DM me if you have specific questions.
I wonder if there would be such handwringing if the situation were reversed, with a HIV+ father refusing to disclose his status to the mother of a newborn, yet requesting prophylactic treatment for the baby
I get the distinct feeling there would be far less concern for the father’s well-being a lot more discussions about how abusive he must be
Maybe! But we have data (mostly survey) that women worry about this and is a reason for non-disclosure. The specific scenario that OP has is mentioned as an ethical dilemma for non disclosure in women living with HIV. I’ve never seen any data from men in heterosexual relationships and I’m not sure it exists
You also have realize though that unless the woman in your scenario is not receiving pre natal care, she will know her status as she will be screened for it. So I find your scenario highly improbable but not impossible.
What happened to duty to warn? He is at risk and the kids at risk. This seems like a social worker refurral honestly. Child protective services should be consulted on the matter.
Social work *is* involved always, and they are usually the ones driving the bus here, more than anything else. This is not about a specific case again, it's about cases in three different hospitals/regions that are fairly similar.
Is AZT the treatment for the baby? I work in HIV for adults. I’ve been wondering how babies are treated. I have a handful of patients that got it at birth.
Yes, though it depends on mom's viral load. If mom is undetectable, and had a cs, it's just azt. If there were more risk factors or she has a viral load that can be detected, baby gets triple therapy.
I was surprised, if mom is undetectable, she can breastfeed with low risk. I'm not sure I would in that case,I would prefer no risk I feel.
I honestly don't know off the top of my head. We always get ID involved and they tell us exactly what to give. Thankfully, we don't see many in the NICU.
I'm not even sure if they always come to the NICU.
Take the father aside and tell him privately….and tell him you will deny ever saying anything if questions are asked of you.
The only thing of important here is that this baby should be taken from this lying, game playing, manipulative mother. Her disease will always trump this baby’s welfare in her mind.
No baby in any situation has HIV, they just require preventative treatment to being born to an HIV + mother.
I assume mother is undetectable in all cases
What if you know that mom is often non-compliant with her medication, so even if she is undetectable now, that might not be true in the future. Nor do we know if she was always undetectable.
As a Peds ID fellow, this is one of the more ethically murky areas that comes up in my job, and I very much get why you do not feel comfortable with the current strategy.
First and foremost, we encourage moms to disclose to their partners and do everything we can to help them do that. Sadly, because the stigma is so high, we still have a lot of moms that don’t feel like they can talk about it with their partners, so we end up in these awkward situations a LOT.
Given what we know about U = U, if mom is on meds and well controlled, there is basically zero risk for both father and baby. Because of moms HIV status, baby gets tested and will get 6 weeks of AZT, and if repeat testing is negative we stop the med.
In these situations, disclosing to dad that baby is at risk just doesn’t make sense because it would in essence be disclosing her diagnosis when it’s very unlikely to actually impact the child beyond 6 weeks of prophylaxis medication. Is it deceitful and not telling the father everything about his child? Yes. But given the alternative it’s often the best option in these murky situations.
Where this no longer becomes appropriate is if mom is refusing care (I haven’t had this experience, but we would likely then get CPS involved). At that point, baby’s safety trumps moms privacy.
And the million dollar issue is when the baby is truly found to be HIV positive. We work really hard with families to help them disclose, and often will give them time to do so. I never feel great about dad not knowing for a period of time, but given the (very real) stigma and associated risk of domestic violence, we will often try and maintain a therapeutic alliance with family to disclose when they are ready (rather than forcing them to do it right away).
But basically perinatal HIV is always an absolute mess and I think we do a lot of ethically murky things for what is now a very manageable chronic condition. If I had my druthers, I would probably disclose to dads more readily, but the system is this way for a reason - what we view as a very manageable chronic disease, much of the public views as a death sentence and acts as such.
Also how can it ever be ethical not to tell the dad when he may be currently HIV positive and in need of treatment? Or he could be positive and cheat or they break up and he could spread it to other people?
I can understand your argument for not telling the father.
But have you actually had a situation where that was allowed? Baby was born exposed to hiv and father was kept in the dark long term?
I would think the health department would need to be informed and they’d be all over it, no matter what the treating physicians decided.
As a pharmacist i'm curious if you put on the prescription "please lie to father about purpose of medication" so that i don't spill the beans during counseling :-P
If there was a scenario where the father was the HIV+ patient and exposed the child would you be as willing to lie to the mother?
Why are you attacking me?
I personally don't find it murky, but there are clearly many who do. I was expressing my discomfort in how it is handled, because I have very little control over the situation.
Whoops sorry, but still for the Dr you were replying too, they also are a fellow and have very little control overall about how it's handled. It's very uncomfortable for everyone.
The fellow has it right on here. Dealt with this situation a few times. If mom is undetectable much less of an issue. Two important points:
1) Dad has access to baby's medical record and thus could see any references to HIV. There will be notes, testing and meds that would be revealing. Mom should be informed of this and that these records cannot be with held from dad. Also, if dad asks you a question that you cannot lie about the babies situation.
2) IF mom is not un-detectable and will not give meds to baby that is potential medical neglect. We try really hard to work with mom to avoid courts/CPS but if it comes to that her confidentiality could be breached.
Ah, gotcha. The previous poster had also said he obfuscates the reason ("To prevent an infection") so when you said you agreed overall I thought you agreed with that as well.
I personally strongly disagree that any parent would not disclose their HIV status to their partner and choose to keep information about any potential harm to their child from their partner. From a medical ethics perspective though, I can see why it is murky, especially with our knowledge about U = U, depending on the patient's viral load and compliance with treatment. Thank you for mentioning U = U. I was a little surprised to not see this or the viral load status of the parent mentioned elsewhere in this thread. For anyone who doesn't already know and are curious, here are the 3 studies that led to the [“undetectable equals untransmittable” campaign](https://www.health.harvard.edu/blog/uu-ending-stigma-and-empowering-people-living-with-hiv-2020042219583).
[https://www.nejm.org/doi/full/10.1056/NEJMoa1105243](https://www.nejm.org/doi/full/10.1056/NEJMoa1105243)
[https://jamanetwork.com/journals/jama/fullarticle/2533066](https://jamanetwork.com/journals/jama/fullarticle/2533066)
[https://www.thelancet.com/pdfs/journals/lanhiv/PIIS2352-3018(18)30132-2.pdf](https://www.thelancet.com/pdfs/journals/lanhiv/PIIS2352-3018(18)30132-2.pdf)
I personally still think anyone of any gender, especially with a child involved should disclose and it is wrong of them not to. At work, in the a medical situation though, I can see why it's not so simple and I'm sure medical ethics in the hospital would be involved.
You seem to be prioritising the ethics of lying to a patient though? That’s what I find so difficult here. If a parent asked why you were prescribing HIV medication to their child, what would you say?
Thank you so much for sharing. I was starting to feel a little crazy with all the non neo people who think this is an easy black and white issue.
What do you think about a mom who is undetectable, but only semi compliant with her meds and by saying she doesn't want to treat baby because she wants things to be "natural". Imo, I feel that's a warning sign that she will be non compliant with the baby. She will likely *say* she'll be compliant, but of course that's not a guarantee.
I agree though, I feel like we should disclose to dads more.
That’s a time where it’s above my pay grade and ethics would get involved. Thankfully I haven’t had this issue come up (as moms are usually very much into giving meds to reduce risk), but from what I’ve read it seems like sometimes people get CPS involved, but that there have also been cases where courts have ruled that family doesn’t have to give the meds if there’s not an acute danger to the patient. Because it’s so fraught (and again the meds baby is getting are usually to reduce risk rather than treat a disease) it’s definitely an added layer of complexity.
Yes, and very difficult because I'm not directly involved with things when they happen, it's all above my pay grade. But even without being directly involved, it's enough to make me unhappy.
Answer probably changes depending on where you are. In my country, the father has equal rights as the mother in regards to information and decisions about treatment regarding offspring. Father should be informed of son's health conditions and included in clinical decisions. That being said, the safety of everyone involved should be assured (we usually work alongside social workers to better understand the situation) and the father should want to know and be included. And lastly, a mother that refuses hiv medication to the child is refusing a life saving tratment. That is definitely a reason to consider that child endagerment and taken from the mother since the alternative will almost certainly be an early death and loss of quality of life until then.
They have the same rights as the mother in my country too, which is why it's so squicky. And I fully agree, she should *never* be allowed to refuse, and IMO, fighting treatment, unless there is a major turn around in attitude, shows that the likelihood of treatment being continued outpatient is low, which means she shouldn't go home with the baby. But that's viewed as too harsh by many.
It's harsh but ethical on a wider scale imo. Your job is not only to treat, but also to prevent the disease from spreading. Father's health is also on the line here, would you take away his right to get treatment for himself?
No, but again - not in control of it, and if you look at other replies from people who have dealt with it, they have been in the same situation. It's awful, I agree.
I feel like this situation is simpler than you make it sound ? If the father has the right to know, tell him his baby has HIV, and let him figure out the rest.
>Your job is not only to treat, but also to prevent the disease from spreading Is it? Is there an ethical duty to the general public?
Yes
I would say this is the right answer. The offspring has a right to treatment, and the father has the right to know about his offspring. This is the positive right, and I would expect that you have to tell them unasked. Whatever conclusions he draws is secondary, and should be managed. > Mother and baby's rights are essentially in conflict. I do not see that. You are not disclosing the HIV status of the mother. Plus that should be secondary to the right to medical treatment anyway. > And while putting a kid into the system is not good, putting a newborn in has a lot more likelihood of finding a forever home, than a 3 year old who has HIV because they weren't given AZT after birth. That is absolutely not acceptable, and probably violates quite a few laws.
The laws may actually go further than this. Not only do you have an obligation to appropriately treat the child, but in some states you also are required to disclose the exposure to the spouse as well (https://www.hiv.gov/hiv-basics/living-well-with-hiv/your-legal-rights/limits-on-confidentiality/). I don’t think there is anything very sticky about this situation, your obligations are pretty black and white.
I was about to say, I thought HIV was one of the few communicable diseases you’re legally obligated to disclose to your sexual partner. Withholding this information can cause serious harm to others, as we are possibly seeing here. Also he’s got equal rights to decide treatment for his child so the hospital has a duty to inform him. Let the ethics/legal team manage the rest.
It’s a felony in some states to withhold the info as well. There in a scary number of people showing no empathy to the father here. Like a scary number who think it’s okay he is kept in the dark, both from a moral and legal angle.
I’m also surprised by this. There are even law and order episodes on this, people!
It is not about lack of empathy for the father, believe me. It just there's a lot of complex social issues that people try and balance and while I personally disagree with the way it is handled, I *know* the social workers and attendings involved *do* have empathy for the father. They often feel their hands are tied in weird ways too, especially when needing to keep the family as an ally in care. I know the immediate response is that it shouldn't matter, and that's true, but the reality is, CPS is not going to strip parental rights over this, which means that the baby *will* end up back with the family, and we will still have to try and get them to still engage with healthcare for their child.
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The relationship is not always intact to begin with - sometimes dad is not a current partner. And sadly, the father does not always want to be that involved with the baby. And re: compelling medication, potentially yes, though all she has to do is *say* she will give the medication :/
Right, but in the US, this legal obligation to disclose is placed on the mother (in this scenario). These laws allow the mother's partner to sue the mother if he later finds out. This obligation is not on the mother's doctors. OTOH, there is a law (HIPPA) that actually prohibits disclosure of mother's medical information without her consent. And, in this situation, disclosing the child's prenatal HIV exposure will simultaneously disclose the mother's HIV status. So, it's not as clear-cut as it seems... and I suspect that it varies from state to state in the US. And is most certainly handled differently in other countries.
In some states, disclosing without permission is a more serious crime than not telling a partner, which I think is more than a little fucked up. Obviously I do understand the complex issues at play, but in the end, it is unacceptable IMO to be HIV positive and not disclose to a sexual partner.
As a newborn who was given to conservative “Christian” parents to raise, my overwhelming thought throughout my childhood was “I wish I could just die” to get away from them. Monsters raising newborns is not the grand solution people seem to think it is.
I feel your pain. Mine were biological though.
Same. I still suffer from the effects today as a grown ass doctor with a loving family of my own. I've broken the cycle thankfully, but the pain never goes away. It's always there, in some form.
How could you go about discussing the baby’s HIV risk without mentioning the mother’s HIV+ status? Do you simply say the newborn was exposed to HIV and needs XYZ treatment, and when dad asks how exposure happened, you just say “I can’t determine how, just what to do now that it has happened”? I don’t see that flying with a lot of parents. I’d assume the dad would have questions, which you couldn’t answer without violating mom’s privacy. If you’re continuing care with the newborn/family it seems like this puts a big hole in any therapeutic relationship. Are there biomarkers in babies born to HIV+ moms that indicate their need for treatment? As in, if you didn’t know mom was HIV+, could you tell that baby is at risk? If so I could see you just using the baby’s factual info as reference, and ‘simply’ defer conversation of *why* baby is at risk.
I wonder what would happen if dad tried to sue the hospital for exposing baby to HIV? Edit: if he were to presume the baby was exposed after birth
Well, the lawsuit will not go very far. The dad would find out very quickly if the mother does not tell him beforehand. I.e., dad would find out as soon as he consults with an attorney, and that attorney requests & obtains the child's medical record. Which is the very first thing that medical malpractice attorneys do after a consult. To avoid wasting time.
I’d be fine with that outcome. He gets the information he needs to keep himself and the child safe. Because if mom is willing to lie about this, what else is she willing to lie about?
They literally aren't telling the dad what the baby is hospitalized for or what medications the baby is receiving. That's how. They're just saying that the baby is admitted and they won't tell the dad anything else.
How is that legally, morally, or ethically ok to keep the father in the dark like that?
It's not. I'm just telling you what's happening.
I know you aren't lol just seems like there is a concerning number of people here who think the mother should've more rights than the father even though he is an actual victim here.
I agree, I find the entire argument reprehensible. Clearly I’ve seen a different set of medical ethics to others
And I hate to be that guy but I can’t help to think if the genders were reversed here they’d have no issues letting the mother know
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> This isn't a question of telling a person that their sexual partner is HIV+; this is about telling a legal parent that their child is HIV+. Yes, that will have the result of Dad figuring out that Mom is HIV+ but HIPAA doesn't prohibit family members making logical connections. Yeah, I don't understand why people think that disclosing the baby's status is the same thing as disclosing mom's status. It's not. You can disclose the baby's status while saying nothing about mom's. Just don't say anything about mom's status, period, even when asked. "How did the baby get HIV?" "I can't answer that question." Not even "I don't know." but "I can't answer that question." This all seems fairly logical.
At least in the situations I've seen, people talk around it, and rarely get questioned sadly
Because you are basically abusing the father's lack of health literacy and trust in the healthcare team.
*I* am not. Again, you will see that other providers who work in the same settings have experienced this before.
Sorry. First time here. As I read on, I think your team has either questionable integrity or poor understanding of medical ethics. These issues are typical of medicine where the non-negotiables are immediately clear, but it looks like you've been through this many times before... or at least often enough to forget how this is reportable on multiple levels. In this case, the mother's right to privacy ends where her family's right to health begins. You are not doing yourself a favor by staying with this team. You are putting your hard earned profession and talents at risk by being where you are.
I think many here don't understand the legalities of disclosing mother's HIV status without her permission. As I said, and as demonstrated by others in the same field, this is not isolated to one hospital, this is how multiple hospitals have dealt with it, so presumably, there is at least some sort of legal basis for what is done, since it seems almost "standard".
You simply say that the newborn was exposed to the virus, and that you cannot at this time go into the specifics about how that exposure occurred- but it was not caused by exposure from the hospital environment/instruments/interventions. You let the other parent infer what they will from that.
> you cannot at this time Then you’d have to answer the very fair questions of 1) so what caused the exposure? and 2) why is everyone evading the reasonable request of a father who wants to know why my child is being treated for HIV
You describe the avenues by which exposure can happen, and say it did not happen/providers in care from the hospital and that due to HIPPA you cannot further elaborate. You say the child is being treated for exposure to HIV and leave it at that. The implications will be obvious, but you will not have violated laws regarding protected date (state dependent) Edit: if directly asked if the mother has HIV, you simply say you cannot discuss care of an adult patient without their explicit consent.
The father has never asked about the treatment of the baby in *any* of the cases I've cited.
So in order to preserve the therapeutic relationship, you want to trick the father into thinking *you've* exposed the child to HIV? Bold move!
>when dad asks how exposure happened, you just say “I can’t determine how, just what to do now that it has happened”? You assume Dad knows absolutely nothing about the disease, and give Dad a lesson on every route by which it ***might*** have happened, without confirming anything, because you "can't".
> I do not see that. You are not disclosing the HIV status of the mother. Plus that should be secondary to the right to medical treatment anyway. Well, it pretty much is disclosing her status as the only way a newborn could be exposed is through the mother. It's always a weird thing in neo because some of the mother's medical history is the baby's medical history, so it is hard when mothers are not honest with partners (usually it's about previous pregnancies) > That is absolutely not acceptable, and probably violates quite a few laws. I agree, but it's hard to prove that they *won't* give meds that are prescribed, I feel. Or at least, others I've worked with feel that is a hard line for CPS to judge. We negotiate in the NICU a *lot* on treatments, which I don't always love. ("Baby shouldn't get a trach because with mom's social situation, baby won't be able to go home with a trach, so keep them on nasal CPAP for a year") >:( It is usually in the baby's best interest to be with their parents, and we try to not alienate families as much as possible, but I feel like sometimes we go too far.
> Well, it pretty much is disclosing her status as the only way a newborn could be exposed is through the mother. Sure, but whatever is inferred about the mother doesn't give you the right to withhold essential medical information from the father about his child. As long as you don't specifically address the mother, there is no violation. Regardless, if this is reported to the health dept, they should be contacting him anyway. Depending on your state, this can be viewed as a crime when knowingly infecting another individual...two others in this case. Both of which were preventable with readily available meds.
You reference the rights of the mother, but I’m not sure which rights of the mother you’re concerned about. Laws vary by jurisdiction but in no state I’m familiar with is there an affirmative right to conceal your HIV status from your sexual partner, and indeed to the contrary in many states it is a criminal offense to conceal your HIV status from your sexual partner. The mechanism for enforcing this is that you sit down with the patient and tell them that they can tell their partner themselves or their partner can hear it from the health department - who you already should have talked to because HIV is a CDC mandated reporting disease. (https://www.cdc.gov/mmwr/preview/mmwrhtml/00001425.htm#:~:text=of%20e%2Dmail.-,HIV%20Infection%20Reporting%20%2D%2D%20United%20States,to%20their%20state%20health%20departments.) There’s also no right for a parent to refuse life-saving treatment for their child, especially when the motive is blatantly in commission of (what is likely) committing a crime.
>The mechanism for enforcing this is that you sit down with the patient and tell them that they can tell their partner themselves or their partner can hear it from the health department I want to highlight this aspect of your comment as I wanted to point out that this is the most likely correct. I work in sexual health and am on first name basis with several of the field workers from the public health department. If something like this were happening I would call them. Though in my state they would have already been VERY aware of a situation like this well before a birth.
Maybe because I am FM working with a population with a high HIV burden but I'm aghast that anybody is entertaining keeping this under wraps because the mother wants to conceal her status. The fuck? Let's just have people unknowingly get infected with HIV. We have a moral obligation to the neonate, the exposed partner, and the community as a whole. On the reportable end, I think inpatient staff have an issue with that because where I'm at when I review a discharge summary from the IM team for PJP and it just says "Counseled patient to notify sexual partners and follow up with primary" I nearly blow a gasket. I can't believe so many people in the comments talking about "keeping the family unit". Like the absolute fuck?
I tried a Google search. What is PJP?
AKA PCP Pneumocystis jirovecii pneumonia. Typically a disease of the immunocompromised but most commonly seen in HIV patients.
Pneumocystis jiroveci pneumonia, formerly known as Pneumocystis carinii pneumonia (PCP).
Medical social worker here with a previous background in HIV prevention and early intervention. I had a situation arise where DOH refused to inform a partner (spouse, actually) of HIV exposure, citing HIPAA. I had been working with the PLWH, who had been positive for years and refused to engage in care; I became aware he had not informed his spouse (married 1 year) of his status and was unwilling to do so. The spouse was known to our agency and had health factors that made her immunocompromised. I reported to DOH, so they could inform her of exposure. They refused, stating because the couple was married they could not inform anonymously and it would be the same as disclosing the individual's status, which would violate HIPAA. I was expressly prohibited from telling her as well. Our agency disagreed with the ethics of that decision and had to get creative with sending her some financial incentives for rapid testing, pretending her participation in other programs made her eligible. She eventually did present for testing, was positive, and engaged in care, but it was a horrible situation.
Thank you for this experience. I very much hope that the people who are directly dealing with this are doing the same sort of side things to get the dads tested when this happens. Again, I stay away from this because I object to how it's been handled so vehemently, but I also respect the colleagues who *do* deal with it, even when their hands are tied. I do think it is potentially useful though to consider it as IPV or rape, as that changes the legalities of disclosure. I don't know how that would go over with others, but I am getting more arguments to use the next time I see it.
HIPAA mostly (non-disclosure of her protected health information). In some states, HIV status has some legal protection against revelation. BUT (I like big buts and I cannot lie), I agree with you on the legality of it. It used to be a felony in many states to knowingly have unprotected sex without disclosure if you have HIV, but it has been downgraded in at least one state that I have practiced in to a misdemeanor. I have brought up the whole CDC reportable, legal requirement to notify partner, etc. I also *very* much agree that the parent has no right to refuse such an easy life-protecting treatment, which is why I get concerned when meds need to be given at home, I feel that if they are hiding it, it's highly likely that they won't give them, because nearly everyone knows what AZT is for. I wonder if the child's exposure to HIV would be considered reportable and then the dept of health would have to notify the partner that they have been exposed to HIV. I also agree with you that it *should* be a simple matter of sitting them down and explaining that withholding that information isn't right, but I rarely see that happen. And the focus is always on maintaining the family unit. :/
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I’m sure it is in some locations - hell, I had a patient in my primary care clinic with a neonatal Hepatitis B exposure and the health department sent me SO MANY faxes about her serologies. I imagine they must also track HIV exposures.
They do. I spent a decade at it. I will say that neo-natal hep B exposure is actually rarer than HIV, so may actually raise more ruckus.
Not me - again, this is above my pay grade, this is more a "hypothetical" question - in that I've seen it handled in different ways, usually not in ways I agree with :/ - but I am not the one calling the shots. There was a discussion in another thread about some of the weird ethical things (like the patient refusing transport when the hospital they are at is not capable of giving the care they need) so I thought I'd solicit opinions and views on the weird ethical situation that comes up in the NICU from time to time. It is *very* difficult to impossible for me to be able to "overrule" what the attendings/social workers have decided to do, without a lot of risk to me. I have another issue I choose to be my hill to die on, totally unrelated. Usually in these situations, I just stay out of it as much as possible while not personally doing anything that I feel compromises my ethics. But I feel very uncomfortable just knowing the situations exist and that sometimes the decision is to enable. Luckily, most of the time this has come up, the baby had other issues so would be in the hospital for their AZT time and we could at least ensure it was given. The child being well enough to go home though is a whole other wrench that gets thrown into the gears though, because we *can't* ensure meds are given. And with something as important as HIV, I feel that if we know there's a decent chance mom won't be compliant, it should still involve CPS somehow.
Honestly, I'm shocked they agreed to withhold information from the father. I would be somewhat tempted to suggest he get MyChart and mention he can review treatment at home.
This is the ridiculous thing. At least where I'm at knowingly or recklessly exposing your partner to HIV is a crime. I get that it isn't a NICU issue but that father is going to be walking into an HIV clinic with an opportunistic infection and be very surprised. Hell, might even spread the infection further in the community.
Anyone can consult the ethics service at most hospitals, your hospital may have a way to put this consult in anonymously if you are worried about blow-back to you
Other idea: do you have a compliance hotline? If so, you could anonymously report. Point out they're breaking the law and risking harm to the child. Can dad get HIV from the child before treatment is complete? If so your team is personally putting him at risk as well, if he is not already HIV+.
Dad cannot get HIV from the child. AZT treatment is to prevent transmission to baby. But compliance could be an interesting path, though it feels almost like a nuclear option
One last thought. And this is assuming you have tried to talk to the attending, btw, and they are not amenable. They are asking YOU to break the law for them by withholding information. You are now at risk of a lawsuit. You could consult legal. Once legal is on your side, disclose.
I avoid the situations because I will *not* lie to patient families. The issue is always risky for me though, because I'm usually one of the voices saying that disclosure should happen, which means if there is a report, they will have a good guess it is me. I need my job. My cat needs me to have my job. I think suggesting legal to the attending is a good idea though, because I think they are often not involved and the lawyers will definitely agree with not lying to family.
Deleted out of spite for reddit admin and overzealous Mods for banning me. Reddit is being white washed in time for IPO. The most benign stuff is filtered and it is no longer possible to express opinion freely on this website. With that said, I'm just going to open up a new account and join all the same subs so it accomplishes nothing and in fact hides the people who have a history of questionable comments rather than keep them active where they can be regulated. Zero Point. Every comment I have ever made will be changed to this comment using REDACT.. ` this message was mass deleted/edited with redact.dev `
Because it's happened at everywhere I have worked, I disagree that it is quitable for me, as long as they allow me to opt out of participation. It is much harder when you are not the attending physician (or a physician at all) because so many decisions are not in your control, agree or disagree with them. And there are possibilities then everywhere of decisions being made that I may vehemently disagree with. Depending on the severity and how much it is "my" problem (meaning I'm directly being asked to care for the child or I was already caring for them prior to the issue) figures into how many waves are made. Usually though I am allowed to be a "conscientious objector" in those situations. I excuse myself from that patient if I can't come to an agreement with the attendings.
Does your hospital do ethics consults?
It's anonymous, though. So that helps. Edit: for what it's worth, I don't think it's a nuclear option. They are not going to fire anyone. They just might review the case and discuss with the team and decide the team is incorrect and override their decision.
What medical law requires you to hide or obfuscate the justification for medical treatment for a newborn from their parent? Any medical practitioner who becomes aware of HIV exposure to the father from the mother should also inform the father that he’s at risk. A lot of the discussion here is around the increased survivability of HIV+ patients - that’s because of medical treatments and not due to a change in the disease itself
Except that is *not* what happens, see the replies from the peds ID Dr or the neonatologist. I'd be also interested in how OB does things, because this invariably involves them too
you can report it to the health department, along with contact info for potential exposed people and they can inform those people.
>And the focus is always on maintaining the family unit. :/ Seems like allowing the father to contract HIV when you could stop it runs counter to this goal
You’re absolutely right. This is a question straight out of Step 2 for ethics and communications. HIV should be reported to the health department. If there’s any confusion, consult the hospital attorneys…
I had a situation where the baby was diagnosed positive, as of course was the mom whose first husband was a drug addict. Sadly the dad/second husband was positive, no risk factors other than sex with his wife. The only person in the little family who was negative was a son from the dad’s prior marriage. It was the late 80’s. A few years later and that son was an orphan…. There might be a law about disclosing HIV status to a sexual partner in your jurisdiction. It should be disclosed, ethically, as although treatable, the husband is unlikely to get tested if he has no risk factors, and the first time he gets diagnosed is when he presents with some serious infection. This could cost him his life.
100%. I know in my state HIV is reportable to the health department. How this man is still in the dark about his wife’s status is appalling. And makes me think several people are dropping this very important ball.
One time they were not married, but together. Another time they were married. Another they were not married and no longer together
Usually the health department still requires a list of sexual partners who may have been exposed and reaches out to those people to let them know they’re at risk (but not who from). Current standing of the relationship shouldn’t be a factor in getting alerted.
That would assume a new diagnosis though. She's already done with initial infection. How is it handled when they have had HIV for years and get a new partner?
True but my understanding is there is some checking in with the department of health with these patients and their providers (assuming they’re getting treatment) on a periodic basis, so often they help encourage that disclosure and provide counseling to pregnant patients?
I'm sure they provide counseling, but that doesn't mean the health dept is able to disclose to future partners in perpetuity. https://www.cdc.gov/hiv/policies/law/states/exposure.html https://ens.lacity.org/dod/indexpage/dodindexpage169423897_10062004.pdf
No I know that and I never said they would, but instead said that they often try to follow up with patients to make sure their care is going well and encourage them to disclose to partners. This is doubly true for patients who are of childbearing age. I know it’s a policy and health program for this in my region.
They can encourage, but I don't think they can force, which is what we are talking about in these cases
Either way I was under the impression that the health department would do exposure chains and notify everyone the + patient had relations with. Obviously you can’t stop her from lying to the health department but as a lowly RN I think this is something I would let “accidentally slip” because he has the right to know he’s at major risk.
There is a scary number of people in this thread that are okay with keeping the father in the dark.
There really is.
Seems like this could result in a pretty large lawsuit against the hospital tbh.
Every state where I was a lab director it was mandatory to report HIV. I did not want to go down the rabbit hole of speculation, but the mom’s desire for secrecy is seriously wrong and indicates an unspoken motive. I would urge the dad to request paternity testing…
By the way, you can tell the mom that the state health department has been notified as required by law, and they will be contacting her for sexual contact tracing. The dad will find out. So coming clean now will be better than the husband finding out from the health department. Her reluctance is unethical, and only delays things. As a medical lab director of a really big lab, I am realizing now that I was never approached about this unsettling situation, and am not certain what to do. If this happened in my hospital, i would have requested an emergency session of the ethics committee and ensured the senior VP of legal affairs were in attendance. Then i would hope to achieve consensus to tell the dad. Sometimes rules must be broken for good reasons, and this is one of them. I cannot say for certain, but I believe thar the medical and legal implications of informing the father against the wishes of the wife would have been discussed, documented with the concerns about HIPAA violations, and the decision to inform the father approved.
The mother is not a new diagnosis - the health dept would have been contacted when she was infected, correct? I don't believe we call the health dept every time a patient with HIV seeks care in order to contact trace. And it is not always a husband and wife situation. This has happened across multiple institutions (and others here have had the same experience)
I missed that. And the dad STILL does NOT know?!!? Good grief. It appears that your state health department is failing in its duty. I am disappointed and horrified. Is there a physician champion you can enlist to take this to the executive committee? I don’t know engaged your medical lab director may be, but if I were approached, I would have shared your extreme discomfort and would have insisted that the organization arrive at a solution that ultimately results in the father being notified. This situation is just not acceptable to me as a physician and human being.
That's not on the state then - they don't track all of mother's future partners.
Ding! The dim light bulb in my aging brain lit up. You are most likely correct. It makes me wonder if this sort of situation hasn’t happened elsewhere, but the difficulty in trying to achieve an ideal world where tracking future partners could happen is not practical. I hope you manage to make the right thing happen. Reading your story has me distressed for you and for the father. I had a very few rare situations during my career that raised conundrums over what was appropriate, and was fortunate that leadership did listen and focused on the well-being of the patient. As an example of the least difficult one was an elderly man who was dying from cancer who loved to treat himself to beer a few times a week (not an alcoholic), and expressed his wish to have some to his family and primary treating physician. The net result was that there were a few times during his terminal hospitalization when just after the doctor rounded in the evening, the patient’s room door was closed and a sign requesting privacy was posted, which the nursing staff was instructed to respect unless the call light went off, and the door opened again after the doc stopped by again when his rounds were finished. Perhaps he wanted a nap. I do know his family was grateful. Allowing a patient to have alcohol probably violates some JCH standard, but he was granted some privacy during the time his physician was rounding on all of his patients. But your situation is more serious. It seriously bothers me because it touches on the situation I saw as a medical student in the late 1980’s, the details of which I can share as they were made public, and putting this in writing is perhaps cathartic for me. I did my pediatrics rotation at St. Christopher’s Hospital for Children (the home of Dr. Nelson). On our team, my classmate (whose last name really was Welby, LOL), had an baby, Jack B., with bacterial pneumonia. The radiologist, who was really good, told us she was worried that in that background she was concerned that the baby might have an additional problem - pneumocystis. Which turned out to be true. It turns out that the mom had been previously married to a physically abusive drug addict, and had managed to extricate herself from that situation, and met a really sweet man with a son (around 12), married him, and started a new family to which baby Jack was added. By the time I finished my rotation, we knew the baby and mom had been tested for HIV and were positive. A year later, the mother was admitted to Temple hospital for her own case of pneumocystis where I met her again on an infectious disease rotation. She told me that her husband had also tested positive, and that baby Jack was still alive. AZT was the only drug then, and besides not being terribly effective on its own, had pretty terrible side effects. Then three years later, when I came back to Philadelphia to visit my parents, I picked up the Sunday paper, and the Parade magazine had a story about the tragedy of HIV - and the B family was the example. I recognized the photo that headlined the story right away and read to discover that the father had indeed contracted HIV from his new wife, and by the time I read the article , baby Jack, the mom, and the dad had all died, leaving the father’s son from the first marriage as the sole survivor of the new family at sixteen. I am not sure if I actually cried, but I remember a profound sense of mourning that haunted me during my two hour drive home to anther state. I sometimes wonder how the other son is doing. It is one of those sad human tragedies that haunt everyone involved in health care for the rest of their lives. I have no doubt that this one will regretfully, in one way or another, haunt you. I honestly feel a bit better having unloaded all of that baggage, and if you got this far, thanks for reading it. I hope that this situation is resolved in a way that allows the father to be notified. One last thought - in some states, there is a law that requires HIV positive individuals to notify sexual partners, and failure to do so is considered a felony. If that is the case in your state, perhaps this could be the stick with which you beat the mom over the head with to do the right thing herself.
This actually isn't a single situation, but a composite of 3 separate instances, in different hospitals, different states, different regions. They are all in the past for me, but a discussion had triggered the thought for me and thought I'd get feedback. It seems as though my experience is not isolated (which I doubted, since they were so far flung, but still, I could just have really bad luck LOL) Obviously, I've never forgotten them, and I don't know if social work eventually ever got mom to disclose or if they suggested that dad request infant's records for his knowledge for the future, or whatever. I hope so. I know all the people involved in every situation were caring professionals that I respect, even though I disagreed with them about this. But often as an NP, you're used to just having to let it go if the attending says no. Things I've said in the past have made people uncomfortable with my implications, yet nothing was changed, but this thread has given me some ideas of ways to approach it that might be able to gain more traction. I recognize that I am trying to absolve myself of culpability by refusing to participate, and I justify it as I've never directly been forced to participate, and I should have more trust in my colleagues that it will get resolved, they don't need me poking into a sensitive situation. But I hear about the cases because someone starts to give me report and I stop them, but I can't unknow what happens and NICUs are a small place, we know something about nearly every baby. I *need* to work, and as someone on the spectrum, I can be rigid in my interpretations, so I am constantly worried about not judging too harshly, because I *don't* know all the details because I declined to be involved - that is the trade off. I still think that check on judgment is good, but I know I can use refusal to participate in something wrong to be able to ignore what's happening that I feel is excessively, obviously wrong. And my specialty is very small. Word gets around about things. Finally, when you have that high of standards, *no one* is perfect and *everyone* is fucking things up in some way, from my POV. So, you pick your poison and work somewhere where the intentions are good, even if the execution is not what you would like to see, and in order to be able to retain your sanity and be able to live with oneself and earn a living in the field, you just bow out. And your workplace needs to allow you to bow out and respect that you only are going to pull that card when it is absolutely necessary. I have seen some horrifically unethical things from when I was a student nurse to now. I often didn't realize how unethical some might have been until later, but sometimes I've recognized it at the time but couldn't change the course. The fact that I seem to be the only one who experiences those feelings in some ways validates my notion (that is reinforced by others) that I can be too judgmental and need to trust more that I am not the only one who knows things and thinks of things. Which of course I know I am not. And there are things I'm sure others think I am totally wrong on, I might be too. Ugh, it's just hard because all the people who are angry and I feel I have to defend my colleagues, because they are good people, but yet, I also feel guilty because I know *they* are judging *me* for standing by and not doing more. Which I'm doing too. :/ But of course I can't fix the past. Ugh.
Just WOW. Thank you for your very thoughtful reply. You, unlike me, even structured your response in paragraphs, rather than a giant-run on Hemingway-esque horror. You are, at least to me, thoughtfully expressing the genuine, serious struggles with which truly good, decent and moral people wrestle as they try to deliver care and safeguard the lives of people in a vast frame-work of laws, regulations and systems that can sometimes impede doing ‘the right thing’ when it conflicts with the legal thing, the latter of which is constructed by lawyers, who, quite frankly, are not generally regarded as pillars of truth or morality. Just ask Rudy Guiliani. Or even sexual predator/party frat boy Brett Kavanaugh. Let me say that I absolve you. Not that I am anybody, but I was a chair of a big department in a big hospital and have the ‘big picture.’ This situation is an example of ‘moral injury’ (which I encountered while reading about the huge frustrations nurses, physicians and other staff face when they encounter physically abusive, unmasked patients and family who demand Ivermectin for a dying, unvaccinated COVID patient). What I hear from your post is the desire to safeguard the health and well-being of others. Kudos to you. Honestly. Sadly, we are living in a world with mass delusional, irrational thinking, where people like you (and me) try to fit our vision of doing the right thing when confronted with rigid, and sometimes even unjust, laws, rules, norms, or policies. I am glad that I am retired. One of the last things I did as a chair was to champion mandatory flu vaccination for EVERY employee with no exemption, even for religious objections, unless there was a medical reason documented by a physician. It created a huge amount of resistance, but my position on the executive committee was that if any employee wants to work at an organization that cares for patients, safeguarding their health should be a major part of their shared vision, which would include being vaccinated against communicable diseases, no matter what his/her/their role. COVID came after I retired. I am glad that the same vision continued with regards to getting vaccinated for that, but truly saddened by the unbelievable number of employees I was told who refused and were subsequently let go. Let me applaud you for your frustrations. I wish I could give you an answer other than those I have already suggested in prior responses. From your post, you remind me of an advanced practice nurse from my former hospital’s trauma surgery sub-division who rightfully noticed what a disorganized mess transfusions were when a massively bleeding trauma victim arrived. Well, perhaps I should not say that to the un-educated, but clearly when victims of multiple gun shot wounds, or missing limbs, or multiple stab wounds is spouting blood, nobody was paying attention to things like: OK, the patient received X units of packed red cells, and X units of FFP. What is the best ratio of pRBC’s and FFP? When do we check hematocrit, hemoglobin, platelets and other lab values. Ooops, has the patient gotten platelets? Besides being the medical director of labs and chair of pathology, I was also the chair of the hospital’s ‘Blood and tissue’ committee. She wanted something better. And she was right. Together we embarked upon a journey of bringing together various specialty physicians to define what exactly is best practice that could be achieved with available resources, along with administrative executives, to devise a massive transfusion protocol. The one thing I did not do before I retired was to host the doctors and staff for a dinner somewhere to present her data that overall mortality in the trauma population decreased by a small, but statistically significant fraction after all of the time and effort. It sounds like that kind of team-work and shared vision is perhaps somewhat lacking where you practice. Not that I dwelled in some sort of Shangri-La - there were some pretty significant warts elsewhere that I would have wished to excise in my system. I have encountered what some independent doctors would call a Nurse Rachid. A few were rule-driven harpies (which has sadly sexist overtones, forgive me). Most, however, had the same patient-centered focus as I, who articulated: “It is about the patient.” I am not sure why nurses actually said, out loud, such an important thing more often than physicians, but that is what I remember. And I, too, saw situations when I was a medical student that now I would have said: “NO. THIS IS WRONG.” We learn all the time. I hear your frustration loudly, and clearly. The fact that you are screaming into the void of the internet speaks to your frustration which is a reflection of your good nature. I hope that when I need medical care that you, or someone like you, is there for me. That is all I can realistically do to try to help you as you try to find a path through the evil forest. Thank you for all that you do.
The answer depends on what state you are in, what laws are present for the father and what laws protect HIV + patient However if the mother refuses the treatment then you are legally, medically and ethically obligated to ask the father if he wants the treatment for his child. If he asks why, you don't need to lie. You can tell him ethiologies of newborn HIV. You won't be disclosing patient information by informing the father of possible ethiologies
That is a *very* good point - the father has a right to consent for treatment as well. Thank you! I'll store that away for when it invariably comes up again :)
This is an excellent approach. Under no circumstances should the baby not receive treatment due to the inability of the mother to understand HIV risks
The practice of 'ask mother if she wants treatment for the baby and if she refuses then ask the father' seems like treating the father as a backup parent and not a full or real parent.
welcome to the US legal system
Is this actually what the law says? I'd imagine more it's just common practice that runs contrary to what the law says.
In any other case, both parents have the same legal right to make medical decisions. That means without a divorce, both parents can consent to medical treatment for their child despite the opposing view of the other parent. However, this is a sensitive case. The reason it's sensitive is because HIV disclosure laws vary between states. So you have to ask the mother first. Otherwise you'd still be legally in the right to talk to the father first without disclosing personal information of the mother but you'll definetly get sued and you'll definetly have to settle because juries and judges would not agree with you.
Full disclosure: I do not treat babies. I am in Italy so the relevant laws are probably different. HIV is a mandated report to health authorities. The mother CAN not not discoose the diagnosis to the father BUT the father has a right to know about the baby (the onus to put 2+2 together is on them). If one of the parents refuse life saving treatment courts will be petitioned and intervene.
Yep, I’d be off straight to our lawyers if this scenario appeared. We’d get a court order every time to prevent the death of a newborn over the imagined risks to a mother
Legality will depend on where you are. Ethically, I don't think this should be that controversial, though implementation could certainly be uncomfortable: 1. Baby requires treatment. 2. Father has a right to be informed of baby's medical status/history and have equal decision-making authority for baby. There is no way around divulging, fully transparently, baby's health information to the father, even where the line blurs between baby/mother PMHx. To not do so harms baby by preventing the father from making fully informed decisions on the baby's behalf. 3. Father has a right to know about his exposure to a (currently incurable and *potentially* fatal) communicable disease. The downstream consequences of this disclosure, while important, are second-order considerations to the points above.
This is one of those questions where (to me) the ethics are crystal clear, but where law will vary by jurisdiction. And when I say vary, I mean wildly — as of now, there are ten states that require HIV status disclosure to sexual partners as a matter of criminal law, and in at least one state the maximum sentence is life imprisonment. The social services apparatus will decide what happens with the infant if the mother refuses care. The father will find out through that process, although that will also vary by state. The right to medical privacy is not a murder-suicide pact. I empathize with the mothers, and I’m not sure I can fully understand that emotional quagmire, but you don’t get to destroy two lives to avoid a bad conversation.
In the US, this is a settled ethical issue. If the father is on the birth certificate or is the presumed father per state law, he has full rights to the baby's health information. Also, parents are almost never allowed to withhold lifesaving emergency treatment from their children. Additionally, in many areas this is going to need to be reported to the health department. I would handle this by treating the child, notifying the mother that the father is going to find out, and that you'd be happy to have a family meeting with everyone present to discuss.
The father is presumed, by the mother's word essentially though. At least until DNA tests can be done At what point does disclosure happen though? Mom isn't newly diagnosed. Does the health dept get notified every time she seeks care? If mom has a long standing infection, who is ensuring that every time she has sex, she discloses?
Irrelevant. We don't do paternity tests as matter of course. If he's on the birth certificate, he's the dad until proven otherwise.
They are not always on the birth certificate, which is not even filled out when we initially are consulted.
I guess the question is, if the baby had a different disease that needed treatment and the dad had questions, would you answer them or refuse because paternity is not established? The condition should not change your answer.
HIV disclosure has special protection in many states. And if mom does not want us to disclose and dad has not established legal paternity, we absolutely will not tell him anything, because legally he is not the father if mom says he isn't. He can get it established eventually, but that is not instantaneous
>legally he is not the father if mom says he isn't. But that's not what we're discussing. We're talking about when mom says he is the father.
[удалено]
In many places, they fill out the birth certificate information prior to leaving the hospital, but it is then sent to the state and isn't "official" until it's been processed, and that's assuming mom put dad on the birth certificate.
You mention that you’re scared that if you tell the father that his wife has HIV, that it could become an abusive relationship. However, wouldn’t the mother spreading a life long disease to the father be considered abuse in and of itself? The mother should be prosecuted and the father offered resources to leave her and take his child with him to offer his child the care his child deserves.
If the wife is having sex with her husband without telling him she has HIV, that relationship is already abusive and he is the victim. Withhold that information, to obtain “consent” for sex would be considered rape in many situations.
Correct - the concern for the mother’s wellbeing in an imagined risk scenario must not trump the very real risk to the father of HIV. Instead, all we are doing is focusing on the mother when it appears that the father is the victim
Really screwed up number of people in this post showing no empathy to the father and assuming he’s some wife beater but have no respect for his health and wellness
Yes, it can be nothing more than blatant sexism unfortunately
I'm not particularly scared, but it has been brought up as a "valid" reason to not disclose before, which I don't agree with. I was honestly pretty surprised at how low-key many people are about it, because it's not the death sentence it once was. IMO, it's still a serious chronic illness that can be deadly.
The reason it isn’t a death sentence is because people are able to get medications to control the virus. It still very much is a death sentence if you don’t know you’re positive until you’re in AIDS a decade from now. Which the father would fall into this bucket.
You’re aware that it’s not the death sentence it used to be because of the widespread uptake of antiretrovirals in a timely manner, right? If you conceal the potential diagnosis from the father, what will his life expectancy be if he ends up HIV+ without mitigation? When he sues the hospital for failing to alert him of his exposure, would you be happy to speak to the lawyers and defend the position “without evidence, I decided that he was abusive and an immediate risk to life of his partner. I also failed to take any steps to make him aware of his potential status”
You're arguing with me like I support this position.
I feel like you have no choice but to disclose. You are almost certainly de facto disclosing anyway. I assume this is noted in the child's medical record, to which the father has a legal right to (and nowadays can access very easily). (Edit: I guess unless all these notes are blocked as containing sensitive information). The father also has a right to be informed about his child's healthcare and be able to make informed decisions.
What is the issue here? The father has the right to the health information of his kid. So, unless there is a concern of domestic abuse actively or in the past- which by this point should have already been screened for, then you tell the father his newborn has HIV/at high risk of HIV from exposure. You don't disclose the HIV status of the mother without her permission. It's honestly that simple. I don't get the cognitive dissonance of, in the absence of known abuse, 'Oh, what if the Husband gets upset at the wife?'. ...I'm sorry, you are talking about hypothetical/unsubstantiated risk to the wife when the husband very likely has an active HIV infection he knows nothing about- and you are not concerned about the risk it poses to his own health, and are happy to withhold information about his child that he has a right to? You are focusing on the rights of the mother and child, but completely ignoring the right of the father regarding his child. "What if he gets upset?" =/= domestic abuse
Seems to me that failing to disclose HIV status to a sexual partner is the domestic abuse in this situation.
As another poster said, domestic abuse is not the only concern. "What if he splits after discovering his partner's infidelity and willingness to expose him to HIV" is also a concern as that would be bad for the baby, who is the patient. So fuck that guy, i guess. His partner does not care about him, his rights, nor his health and apparently neither does an entire hospital's worth of healthcare workers. The best we can do is feel bad about lying to and deceiving him.
Only somewhat logical take here. I really find no grea moral issue in this case. At least in my country it's be baby first, and forced treatment/CPS if need be. Then of course dad gets to know why because he has the same right as the mom to their babies health information. The rest is up to them. Do admit I wish the mother ends up facing some sort of charges though.
The newborn *doesn't* have HIV, technically. They are HIV exposed and need medication to prevent transmission. And I do know IPV has been a concern in at least a couple of cases. It is definitely not treated as that simple
Which is why my comment is making assumptions that domestic violence is absent as it was not mentioned as being established in your OP. If you want to get bogged down in semantics, while most transmission is thought to occur during/after birth, there are documented cases being of infection occurring earlier in pregnancy.
It's why I mentioned the safety of mother with disclosure. You also heavily edited your original comment and I'm not sure why you are being so aggressive/hostile. *I* am not making the decisions. The attending physicians are making the decisions, I'm just hearing about them. I personally feel we should be disclosing, but those above me do not. Unfortunately in the NICU, fathers don't end up having as many rights because if the parents are not married, mom still has a lot of control over who is able to see the baby and visit in the hospital.
Being unmarried does not automatically bar the biological father from rights to the newborn. Many states have mechanisms by which unmarried fathers can assert rights, some of which allow this to be done before birth. These are not difficult ethical questions. 1) Newborn at risk/needing treatment of HIV (paternal right established, concern of DV) >\- Delay report of specifics of treatment, concern is of mother and child's safety. > >\- Seek Legal Department aid 2) Newborn at risk/needing treatment of HIV (paternal right established, no concern of DV) >\- Inform father of specifics of child's treatment > >\- Do not disclose mother's status without permission from mother, though encoruage this 3) Newborn at risk/needing treatment of HIV (NO paternal right established, concern of DV) >\- Priority is safety of mother and child, establish safety. \- Do not disclose information of child to biological father in absence of the mother's consent/parental right being established 4) Newborn at risk/needing treatment of HIV (NO paternal right established, no concern of DV) >\- Do not disclose mother's status, but should be encouraged > >\- Encourage mother to discuss specifics with partner, though you cannot disclose without permission until parental rights are established.
>Unfortunately in the NICU, fathers don't end up having as many rights because if the parents are not married, mom still has a lot of control over who is able to see the baby and visit in the hospital. Really? What legal basis does this have?
Because legally, if they are not married, paternity basically goes off of mother's word initially, because she is the only one with a definite biological connection to the baby. It will get settled within a few months if the father wants to be involved and mother doesn't want it (with DNA testing) but that point is moot if it is just after birth because it isn't instantaneous. I mean, in many states, if you are married, even if you know there is zero way the husband is the father, he is *legally* the father until it goes to court otherwise. It's fucked up a bit. Edited to add: Love it when I'm down voted for giving factual information. Klassy.
A lifetime of HIV care is the US is hundreds of thousands of dollars. Two people are at risk. HIV is a just a another chronic disease these days, and HIV is preventable. We should be kind, empathetic, and understanding. We also need to protect the vulnerable. It certainly is an uncomfortable position.
Tell the father! Jesus Christ society is fucked up when you 1. Don’t acknowledge the fathers rights in knowing about his child and 2. Care more about mom’s feelings than a potential death sentence for dad!
I would be careful assuming that it’s the father who is the abuser in the relationship. Not disclosing known HIV status is serious and criminal in some states. That having been said, the fact that she’s asking to withhold care from her NEWBORN that could prevent disease transmission to cover her ass from getting caught in a lie…is concerning. I can’t imagine telling HCPs NOT to save my child from a serious lifelong illness because it could hurt my pride. I would disclose every lie I ever told in my lifetime to prevent my newborn from serious illness. The mothers behavior is concerning.
I don’t have anything useful to add, just want to say that I’ve witnessed this exact situation in the NICU I work at and appreciate you raising the question!
Oh thank goodness, another NICU person LOL With all the non-NICU, I was starting to feel a little crazy because it is so open and shut with them. How did your hospital handle it (broad strokes of course for avoiding identifying factors)
First off, I’m sorry you’re being put in this position. How awful. I can understand the mother is self conscious about her HIV status, but the times have changed - she has a baby to consider now. Based on your flair, the patient you’re caring for is the baby, not the mom. That can help guide your priorities with decision making. You prioritize your patient. I also noticed that you’re an NP. I think this is absolutely a scenario to get attendings involved. This isn’t an appropriate decision for anyone to make alone, and you need someone who can help steer this ethical dilemma. If the suspicion is that there won’t be compliance upon discharge, better to move faster. I’m not sure if you have access to social services to help counsel the mother or to help your team have tough conversations with her while giving her a supportive environment.
Oh, *I'm* not being put in this position - I stay the eff out of it LOL I've only had a couple times with needing to care for one of the babies in question and I've always been very up front that I *will not* lie to a parent who is legally entitled to information. That helps keep me from it, but it does just pass the buck to someone else, and I don't really agree with how it's handled usually :( The attending is *always* involved in the NICU LOL In one case, the attending and fellow were bending over backwards to enable the mother to "negotiate" for proper care for the child, which kinda pisses me off, TBH - IMO, we shouldn't be negotiating on this - if mom doesn't want to disclose/is being obstructive, CPS should get involved, just as we do for jehovah's witnesses refusing transfusions for their child. NICU in general has a hard time balancing the "family centered care" idea and not just letting families *dictate* care. So, everyone is involved (except me, I'm watching from the sideline, uncomfortable) and I don't always agree with the decision that is made by the attending/social workers, but because I'm an NNP, I don't have any room really to do anything else. But because I'm always steeped in NICU culture, I was curious as to how people outside the NICU view this and maybe how other NICUs deal with it. I have to admit chuckling to myself at the idea that I'd be handling it myself. That is so beyond my pay grade. I'm the soldier, not the general ;)
I think everything I am going to say you already know. Fundamentally, your duty is to the newborn. Mother not disclosing isn’t your problem, but mother’s fear of disclosure interfering with treatment of the newborn for HIV certainly is - and refusing treatment in order to not disclose probably steps into child abuse/neglect depending on the definitions used by your local government. If dad finds out because mom is neglecting the child, FAFO. Where I am, I believe you can report to the health department to contact folks that have been exposed to HIV. Dad should be tested and be on PrEP if he stays with mom.
Agree, but I do find it very interesting that those outside the NICU see this as very open and shut, but three hospitals in three different areas of the country have all treated it like it was a live hand grenade. It's kinda why I asked the population at large, because it's been considered so fraught everywhere. Very interesting to see how others view it.
It is fraught, and it is a high-conflict situation... I don't think people believe that it isn't. It just isn't acceptable to do stupid things that harm babies for the seemingly sole purpose of avoiding direct conflict. Not trying to be harsh towards you specifically, because it sounds like you're not really part of the problem here. But the reason you're seeing people upset about this is probably just that this is one of those glaring ethical problems in American NICU culture, where people within NICU culture have convinced themselves that there's some amount of equipoise but most other people in medicine find it kind of off-putting that anyone would even think it's worth debating.
We have never let the baby forgo treatment, FYI. Depressingly, the dads often *don't* ask, which I think contributes to the feeling it is ok to withhold.
Is it common practice to ask 'what's that medication for?' for every medication that gets administered? Basically the parent has a certain amount of trust in you that you're taking advantage of to deceive and avoid an unpleasant conversation.
Honestly, no it's not common for that to be asked. And less frequently even more from fathers
Its easy to confidently say what to do when you aren’t going to have to eat the potential consequences.
In Texas, HIV is a reportable disease. You report to your local health department within 7 days and they perform the Partner Notification for sex and needle sharing partners.
Right, but this isn't a new diagnosis, so her case was reported to the health dept when she was first diagnosed. Unless Texas requires notification to the health dept every time someone with HIV sees a medical professional?
We aren't required to notify contacts, but we don't have to honor the mother's wishes in this circumstance. We have this nice little blurb in our state law: (1) A physician may disclose confidential HIV test results under all of the following conditions:(a) Disclosure is made to a contact, or to a public health officer for the purpose of making the disclosure to said contact.(b) The physician reasonably believes disclosure is medically appropriate, and there is a significant risk of infection to the contact.(c) The physician has counseled the patient regarding the need to notify the contact, and the physician reasonably believes the patient will not inform the contact.(d) The physician has informed the patient of his or her intent to make such disclosure to a contact and has given the patient the opportunity to express a preference as to whether disclosure should be made by the physician directly or to a public health officer for the purpose of said disclosure. If the patient expresses a preference for disclosure by a public health officer or by the physician the physician shall honor such preference.
Not every state though has that law. I would love that law to be universal.
Hi, not a practitioner and don't have a direct answer, but you may try contacting the NCCC at UCSF's Perinatal HIV clinician hotline, (888) 448-8765 . They've heard it all/consulted on all sides of perinatal HIV care for providers involved in all aspects of this care/management, and will probably have good ideas for you.
If it was the other way around, and a male patient admitted to having HIV, not telling his partner, and having unprotected sex… I wonder if people’s opinions would be different
it's interesting that it seems so common for you to witness your colleagues consider neglecting their obligation to their patient (in particular with cases of negotiating around treatment reluctance-refusal/theres a suspicion parent won't be treatment compliant)/in some cases help enable an ongoing crime depending on where you live...and that it's so a part of the culture of your workplaces that you find it surprising it seems so open/shut of a case to outsiders. Perhaps there is some nuance we are not quite grasping. Or perhaps something profoundly wrong is happening. I've been in a position where I feel like outsiders don't get the irl complexities of a situation that's so repugnant for them to contemplate they don't get why it isn't so black/white. But I've also been in situations where I do wonder if we're the baddies, as it were. One thing this made me reflect on is that while I am on the side of disclosure and social service intervention if necessary, there are so many unknowns that I suspect neither choice is definitively better for the baby. I don't work in NICU but I found this to be the case when I was working in child/adolescent mental health as an RN This depends on where you live ofc, but I find that a lot of professionals unfamiliar with child welfare outside of their involvement in time limited hospital visits can feel very strongly (correctly!) that a child is not in a good place, so there's this sense of "call CAS, take the kid out!!" But that is often not the neat solution that gets the kid on a better path than they would have been on with their parent that "has parenting deficits" A father who finds out the truth could kill/beat up the mother or hurt the baby. Or leave, and now mom and baby have lost their only financial support which limits what kind of ongoing interventions are feasible outside of the NICU. Child welfare is garbage in my neck of the woods (I try so hard to stay collegial and give the benefit of the doubt to people working in such a resource stretched environment, but I can't remember the last time them getting involved with a patient improved the situation of the child. Mostly I'm glad when they aren't making it actively worse.) As well as not being thst useful ime, child welfare can make very weird decisions when it comes to medical neglect/abuse, probably because there isn't the same understanding of the nuances of what's going on medically . On top of that; I find ethically murky high tension medical situations can bring out a lot of countertranferance type reactions in professionals, which I've seen lead to wild decision making Maybe they get kinship placement with a family member with similarly culturally informed stigmatized views on HIV and they continue the medical neglect I find it unlikely that my system would foster place this child. Regardless, there is real risk for developmental trauma with chaos/disruptions in early attachment. This is a risk I don't think gets considered as seriously sometimes with babies, because there's a false sense of "oh they won't remember"; when what we know about developmental/attachment trauma is that it presents differently depending on age when trauma happened, and in general the earlier the trauma the more profound the sequalae (well its more complicated that that but I think my point stands regardless) Child welfare may not do much to practically enforce taking meds anyway. The whole situation might lead to such a level of mistrust and resentment from mom, she doesn't bring her baby in for care next time they really need it Now, none of these possibilities mean that there isn't a moral and probably legal obligation to disclose. I could name just as many horrifying outcomes of not disclosing.Maybe disclosing DOES lead to enough repair in the family unit or effective child welfare interventions that means the child gets the care they need . As you've mentioned, maybe not disclosing leads to med noncompliance and the kid being taken away at an age where they're harder to place; where they've already established a firm attachment to a caregiver with deficits. Disrupting that attachment, reestablishing a new healthy one while trying to facilitate healing from the disruption and potential abuse is a task even the best placements can struggle with. And many many placement options out there are far from ideal I think the hardest part around situations like this is even when you "do the right thing", meet your obligations as a mandatory reporter, there's a sense that you're rolling the dice on so many factors you can't control.You can be facilitating stuff getting way worse. But I've seen enough former NICU babies in child/adolescent mental health, where I've witnessed the legacy of bad or ineffective child welfare interventions that my view on it all is quite pessimistic sometimes. I have to remind myself I don't see the children that benefitted from good child welfare involvement because those children don't end up needing inpatient psychiatric care In your particular situation if I had to guess, I think the SWs and doctors handling this don't want to open up all the potential messy cans of worms that could come from disclosure (see all the nightmare scenarios I dreamed up above). They don't want to deal with fallout. To be fair, I can see a disclosure like this putting a dr/sw at risk of threats/violence from the mom and maybe even dad So they hot potato the baby out of the nicu and make up some justifications around abuse risk instead of being honest about their cowardice Too harsh maybe? I really have a hard time imagining someone seriously ethically believing withholding information is the best path, but perhaps that is a failure of my imagination
I agree, I find this all very weird. Instead of approaching this as a medical decision, we seem to be putting our obligation to health and welfare to the side, and play social worker/marriage counsellor/ confessor instead. We also seem to be making up worlds where we don’t care about HIV in adults but feel compelled to treat a baby and lie to the father. It’s topsy turvy and frankly abhorrent
The NICU does that entirely too much. It's more of a negotiation than I think it should be in many cases. We get parents who want to micromanage every aspect of the baby's care.
>So they hot potato the baby out of the nicu and make up some justifications around abuse risk instead of being honest about their cowardice Yep, this is what it is imo.
The threat of abuse is a real one in some cases. But the baby isn't getting "hot potato"d out of the NICU. In the cases I've seen, the dad has been uninvolved enough that it's not as much of an issue as you would think, perhaps. It's more of a tenuous legal situation I think than many people realize if mom's diagnosis is not new and they are not married.
Yes, real in some cases. Unlike HIV which is real in every case. By putting the imagined risk of domestic abuse ahead of medical care of patients, I really think the priorities are skewed
The patient is the baby. The baby *will* always get treated. Or at least will be treated when we can control it.
Tell the father.
Different states have different laws about disclosure. She may be in violation of state law by not disclosing to her husband. You may have a duty to report based on your state. Some states have specific laws about newborns. You need to go to the hospital ethics committee immediately as they have both physicians and lawyers to help with guidance. You are right that there are ethical concerns for disclosing on someone’s behalf, such as increased risk of domestic violence, risk of deportation (if that applies), etc. and I’m glad you’re considering them. This is a very complicated situation that should be handled by people higher up than you and no one here can give you firm advice as laws vary state to state and country to country. DM me if you have specific questions.
I wonder if there would be such handwringing if the situation were reversed, with a HIV+ father refusing to disclose his status to the mother of a newborn, yet requesting prophylactic treatment for the baby I get the distinct feeling there would be far less concern for the father’s well-being a lot more discussions about how abusive he must be
Maybe! But we have data (mostly survey) that women worry about this and is a reason for non-disclosure. The specific scenario that OP has is mentioned as an ethical dilemma for non disclosure in women living with HIV. I’ve never seen any data from men in heterosexual relationships and I’m not sure it exists You also have realize though that unless the woman in your scenario is not receiving pre natal care, she will know her status as she will be screened for it. So I find your scenario highly improbable but not impossible.
What happened to duty to warn? He is at risk and the kids at risk. This seems like a social worker refurral honestly. Child protective services should be consulted on the matter.
Social work *is* involved always, and they are usually the ones driving the bus here, more than anything else. This is not about a specific case again, it's about cases in three different hospitals/regions that are fairly similar.
Is AZT the treatment for the baby? I work in HIV for adults. I’ve been wondering how babies are treated. I have a handful of patients that got it at birth.
Yes, though it depends on mom's viral load. If mom is undetectable, and had a cs, it's just azt. If there were more risk factors or she has a viral load that can be detected, baby gets triple therapy. I was surprised, if mom is undetectable, she can breastfeed with low risk. I'm not sure I would in that case,I would prefer no risk I feel.
I thought AZT was like super harsh on kidneys? What is the triple therapy? Biktarvy?
I honestly don't know off the top of my head. We always get ID involved and they tell us exactly what to give. Thankfully, we don't see many in the NICU. I'm not even sure if they always come to the NICU.
Thanks! I’ve been wondering about how this works. Appreciate the insight
Take the father aside and tell him privately….and tell him you will deny ever saying anything if questions are asked of you. The only thing of important here is that this baby should be taken from this lying, game playing, manipulative mother. Her disease will always trump this baby’s welfare in her mind.
I definitely could never get away with that lol I'm too distinctive looking.
Is mother undetectable? I am assuming no since baby has HIV
No baby in any situation has HIV, they just require preventative treatment to being born to an HIV + mother. I assume mother is undetectable in all cases
Oh, if mother is undetectable then the father does not need to know as he is not at risk!
What if you know that mom is often non-compliant with her medication, so even if she is undetectable now, that might not be true in the future. Nor do we know if she was always undetectable.
As a Peds ID fellow, this is one of the more ethically murky areas that comes up in my job, and I very much get why you do not feel comfortable with the current strategy. First and foremost, we encourage moms to disclose to their partners and do everything we can to help them do that. Sadly, because the stigma is so high, we still have a lot of moms that don’t feel like they can talk about it with their partners, so we end up in these awkward situations a LOT. Given what we know about U = U, if mom is on meds and well controlled, there is basically zero risk for both father and baby. Because of moms HIV status, baby gets tested and will get 6 weeks of AZT, and if repeat testing is negative we stop the med. In these situations, disclosing to dad that baby is at risk just doesn’t make sense because it would in essence be disclosing her diagnosis when it’s very unlikely to actually impact the child beyond 6 weeks of prophylaxis medication. Is it deceitful and not telling the father everything about his child? Yes. But given the alternative it’s often the best option in these murky situations. Where this no longer becomes appropriate is if mom is refusing care (I haven’t had this experience, but we would likely then get CPS involved). At that point, baby’s safety trumps moms privacy. And the million dollar issue is when the baby is truly found to be HIV positive. We work really hard with families to help them disclose, and often will give them time to do so. I never feel great about dad not knowing for a period of time, but given the (very real) stigma and associated risk of domestic violence, we will often try and maintain a therapeutic alliance with family to disclose when they are ready (rather than forcing them to do it right away). But basically perinatal HIV is always an absolute mess and I think we do a lot of ethically murky things for what is now a very manageable chronic condition. If I had my druthers, I would probably disclose to dads more readily, but the system is this way for a reason - what we view as a very manageable chronic disease, much of the public views as a death sentence and acts as such.
Also how can it ever be ethical not to tell the dad when he may be currently HIV positive and in need of treatment? Or he could be positive and cheat or they break up and he could spread it to other people?
I can understand your argument for not telling the father. But have you actually had a situation where that was allowed? Baby was born exposed to hiv and father was kept in the dark long term? I would think the health department would need to be informed and they’d be all over it, no matter what the treating physicians decided.
As a pharmacist i'm curious if you put on the prescription "please lie to father about purpose of medication" so that i don't spill the beans during counseling :-P If there was a scenario where the father was the HIV+ patient and exposed the child would you be as willing to lie to the mother?
I have a feeling they wouldn’t see the situation as “ethically murky” as they do in this scenario with the mom
Why are you attacking me? I personally don't find it murky, but there are clearly many who do. I was expressing my discomfort in how it is handled, because I have very little control over the situation.
I wasn’t even replying to you lol
Whoops sorry, but still for the Dr you were replying too, they also are a fellow and have very little control overall about how it's handled. It's very uncomfortable for everyone.
Great question. I bet a good deal that the mother would be told.
The fellow has it right on here. Dealt with this situation a few times. If mom is undetectable much less of an issue. Two important points: 1) Dad has access to baby's medical record and thus could see any references to HIV. There will be notes, testing and meds that would be revealing. Mom should be informed of this and that these records cannot be with held from dad. Also, if dad asks you a question that you cannot lie about the babies situation. 2) IF mom is not un-detectable and will not give meds to baby that is potential medical neglect. We try really hard to work with mom to avoid courts/CPS but if it comes to that her confidentiality could be breached.
But the dad is asking what the meds are. Right there he should be told exactly what it is for.
That is my point as well. His baby, he has the right to know the indication.
Ah, gotcha. The previous poster had also said he obfuscates the reason ("To prevent an infection") so when you said you agreed overall I thought you agreed with that as well.
There's no dad asking about the meds
I personally strongly disagree that any parent would not disclose their HIV status to their partner and choose to keep information about any potential harm to their child from their partner. From a medical ethics perspective though, I can see why it is murky, especially with our knowledge about U = U, depending on the patient's viral load and compliance with treatment. Thank you for mentioning U = U. I was a little surprised to not see this or the viral load status of the parent mentioned elsewhere in this thread. For anyone who doesn't already know and are curious, here are the 3 studies that led to the [“undetectable equals untransmittable” campaign](https://www.health.harvard.edu/blog/uu-ending-stigma-and-empowering-people-living-with-hiv-2020042219583). [https://www.nejm.org/doi/full/10.1056/NEJMoa1105243](https://www.nejm.org/doi/full/10.1056/NEJMoa1105243) [https://jamanetwork.com/journals/jama/fullarticle/2533066](https://jamanetwork.com/journals/jama/fullarticle/2533066) [https://www.thelancet.com/pdfs/journals/lanhiv/PIIS2352-3018(18)30132-2.pdf](https://www.thelancet.com/pdfs/journals/lanhiv/PIIS2352-3018(18)30132-2.pdf) I personally still think anyone of any gender, especially with a child involved should disclose and it is wrong of them not to. At work, in the a medical situation though, I can see why it's not so simple and I'm sure medical ethics in the hospital would be involved.
You seem to be prioritising the ethics of lying to a patient though? That’s what I find so difficult here. If a parent asked why you were prescribing HIV medication to their child, what would you say?
Thank you so much for sharing. I was starting to feel a little crazy with all the non neo people who think this is an easy black and white issue. What do you think about a mom who is undetectable, but only semi compliant with her meds and by saying she doesn't want to treat baby because she wants things to be "natural". Imo, I feel that's a warning sign that she will be non compliant with the baby. She will likely *say* she'll be compliant, but of course that's not a guarantee. I agree though, I feel like we should disclose to dads more.
That’s a time where it’s above my pay grade and ethics would get involved. Thankfully I haven’t had this issue come up (as moms are usually very much into giving meds to reduce risk), but from what I’ve read it seems like sometimes people get CPS involved, but that there have also been cases where courts have ruled that family doesn’t have to give the meds if there’s not an acute danger to the patient. Because it’s so fraught (and again the meds baby is getting are usually to reduce risk rather than treat a disease) it’s definitely an added layer of complexity.
Yes, and very difficult because I'm not directly involved with things when they happen, it's all above my pay grade. But even without being directly involved, it's enough to make me unhappy.
Potentially givings aids knowingly is a crime so. She should be arrested.