Breaking bad news to a patient

[Sharp-edge]

I'm part of a medical team and we're breaking bad news to patients quite often. It's mostly cancers though or hepatitis (usually non viral) to (typically) quite old patients. But now I have a young patient that is HIV+ positive and I feel very sad about him. His condition was rather bad, he came with an opportunistic infection (as eventually proved). We still wait the confirmatory results (but it really can't be anything else) so we haven't told him.

His mother is constantly around and she's a bit bossy. We haven't tell her either because the moment she will google the disease she will find that it's an hiv thing. I feel so sad about that guy because he will be so shocked to hear. He was always making jokes even when on fever. And now that he has no fever because the meds are working he looks very happy. I have his face glued on my mind. We will have the results possibly on Monday and I'm so worried how he will take this. I have arranged a meeting with our psychologist too because I'm afraid of his reaction. I know it's unprofessional but I just wanna hug him and tell him that we're all there for him he's not alone.

But the stigma is here. Half the people don't wanna be the ones who will draw blood from him.

[RawNerdUK]

You say the meds are working, I assume you mean for underlying condition... So it's not like his life is over... Just have to adjust to a life long condition... I know it's not the same in any real way but there are other conditions that are life long so I would try that spin on it..

 The problem I see is going to be the mother, sounds like she is going to poke her noses into this and the kid is not likely to want to share the news with her... Of course no idea of the kids age but hopefully they are 'adult' enough to be allowed to not be forced to share medical details with her.

Also I know we can't know much more, of course, but if you need to vent about it I am sure there will be many a shoulder here for you.

[Guest]

2 hours ago, Sharp-edge said:

I'm part of a medical team and we're breaking bad news to patients quite often. It's mostly cancers though or hepatitis (usually non viral) to (typically) quite old patients. But now I have a young patient that is HIV+ positive and I feel very sad about him. His condition was rather bad, he came with an opportunistic infection (as eventually proved). We still wait the confirmatory results (but it really can't be anything else) so we haven't told him.

His mother is constantly around and she's a bit bossy. We haven't tell her either because the moment she will google the disease she will find that it's an hiv thing. I feel so sad about that guy because he will be so shocked to hear. He was always making jokes even when on fever. And now that he has no fever because the meds are working he looks very happy. I have his face glued on my mind. We will have the results possibly on Monday and I'm so worried how he will take this. I have arranged a meeting with our psychologist too because I'm afraid of his reaction. I know it's unprofessional but I just wanna hug him and tell him that we're all there for him he's not alone.

But the stigma is here. Half the people don't wanna be the ones who will draw blood from him.

 

I don't feel like it's unprofessional for a nurse to hug their patient. When I was diagnosed back in 2011, Both my nurses for the week hugged me after they told me and after my family was told. Just be there for him. You'll know when the time is right for a hug. Act don't hide your compassion for this young man, your patient.

 

I agree. The stigma that this is a highly contagious, out-of-control disease will kill everyone who comes across it. It's bullshit.

 

[ErosWired]

When I was informed that I had HIV, I was lying in my hospital bed. A nurse had just woken me up to tell me that doctors were coming in. There were six of them. Six. It looked like a United Nations of doctors to me, because they seemed to represent people from around the globe. I suppose they were all specialists. They all stood in a line. The one centermost, an Arab by his surname, spoke first.

”You have AIDS,” he said.

Just like that. No lead-in, no cushioning, no preparation, no consideration of any kind. I was stunned. There was no inkling that this was even a possibility. My last HIV test had been (evidently a false) negative.

”Are you saying I have HIV?” I asked.

”No, AIDS,” said the Arab doctor.

Just like that.

 I don’t remember anything anyone said after that.

The point is, because you are approaching this with compassion, practically anything you do with this patient will be better than that.

He is likely to be frightened. The probability is that his knowledge about HIV/AIDS is scant. He will want to know if he is going to die, and if so, how soon. If not, he will want to know if his life as he has known it is ending.

In some ways, it is.

Frankly, I would not have welcomed a hug, and being told that people were “there for me” would have been meaningless - I needed information, and I needed it immediately. I needed to know that I wasn’t doomed, that there were a number of things that were going to need to happen next for my immediate survival, and a shit-ton of things that would have to be different going forward…but that all was not lost. I needed to know that my world wasn’t going to end, and life was going to be worth living. (I didn’t get any of that.)

Be calm for him. Show him he can be unafraid. There’s no sugar-coating this, so don’t try - simply be practical. This is what it is. This is what it means. This is what must be done; this is what can be done; this is what can be hoped for.

There may be issues that arise in relation to the cause of his infection - one only gets HIV in certain ways, and the question ‘How did this happen?’ is going to want an answer he may not be prepared to confront. Be ready to handle the matter delicately. (The local health department here was not delicate. They came to my door the third day after I got home from the hospital wanting the names of everyone I’d fucked. I did not respond kindly to their home interrogation and sent them away empty-handed.)

You say he is young, but not how young. If he is of adult age, I presume he has the right to be informed if his medical condition in privacy and that the mother, however nosy, has no right to any information he does not choose to give her. In the United States, at least, there are quite specific laws pertaining to medical privacy. Be prepared to be firm.

[breedable70]

Back in the early 90's, before any real effective HIV medications, I was diagnosed with HIV. I was just 25. I thought for sure I wouldn't live to see 30..       I was scared, depressed, and terrified of anyone finding out about my diagnosis.

After getting my positive test result at the health department I made an appointment with my family doctor, a gay man himself. I was sitting in the examination room at his office, almost embarrassed to be there when he walked in. He shut the door, nodded, gave me a small smile and asked me to stand up. When I did he took a step or two toward me and hugged me and told me it would be alright. I cried and he kept holding me. I eventually composed myself and we talked about my prognosis and how he was very hopeful about medications coming down the pike. 

That hug was the best thing he could have done for me that day. I will never forget how much it meant and helped me.  Don't be afraid of being a human being when you break the news to this young man. It may be what he needs most.

[onlyraw]

Your profile doesn’t mention where you live… are you in a country where being gay is ok? Is there much of a poz community?
 

I guess I was “lucky” enough to receive this news about 25 years ago - so at least it was after the discovery of “the cocktail” - but testing still took time - so there was a two week waiting period between finding out I was HIV positive and then finding out my T cells were low enough that I actually had AIDS… so I had a bit of time to absorb things

I have also been lucky enough to be treated at a gay health center- so no matter the ailment I presented with, it was always in a stigma free, caring and supportive environment 

so my advice is first- - I hope your patient is old enough to be able to receive the news alone

try and be as non judgmental as possible - be as warm and supportive as you can 

Make sure that after you tell him that he is HiV positive- the very next thing you tell him is that while at the moment this is not “curable” it is VERY treatable- either with just one pill a day - or now one shot every (what 3?) months 

That yes, while this will “change” his life it will not “end” it - that if he takes care of himself he should be able to live a normal life

Talk about Undetectable = un transmissible 

he can still have kids if he wants to 

Be kind, and constantly reassuring 

will you be able to be his primary care provider going forward? - if so let him know you are here for him… that you will be a team and you will get him through this - or try and have an appointment already made for a dr that will be able to treat him 

are there any HIV/AIDS organizations in your area? I was more or less required to go to a group therapy session for about 5 weeks… I am NOT a group therapy kind of guy …  but I found it really helpful to know I was not going through this alone… that I was not the only one stupid enough to get aids in the late 90s

and just let him know there is a huge community of guys who have been living with this for a long time … and he will get through it

as for the mother… is there a way can separate them - do he gets tge news on his own … and someone else can give her the news …. Again with the main message that this is no longer a deadly - but only chronic condition 

good luck

and thank you for being such a caring and concerned healthcare provider… we could use more of your kind 

 

 

 

 

[Sharp-edge]

8 hours ago, RawNerdUK said:

You say the meds are working, I assume you mean for underlying condition...

I didn't know it myself until quite recently, but you can't just start meds on someone with AIDS (because he was in the stage). You have first to make sure he is "clean" of any other infection and then administer, otherwise the immune system will start reacting bad to all these. so it's just for his pneumonia now, but his theatment will be okay I hope.

[Sharp-edge]

5 hours ago, ErosWired said:

”You have AIDS,” he said.

 

Now this is empathy no joking. Why are some people like that? 

 

6 hours ago, ErosWired said:

Be calm for him. Show him he can be unafraid. There’s no sugar-coating this, so don’t try - simply be practical. This is what it is. This is what it means. This is what must be done; this is what can be done; this is what can be hoped for.

 

You can't sugar coat that, even if you put all the world's sugar on it, I know. What I would like him to understand and I fear he won't because when the word hiv is heard bee wax fills one's ear for the rest details, is that it's okay. He will take his meds, he will be okay. He "evaded" death thanks to this diagnosis. Shouldn't he be with us he would die of a stupid-otherwise infection. But somewhere here he will start to wonder why, he may be gay, he could be str8 I don't know but guilt will start inside him.

 

6 hours ago, ErosWired said:

You say he is young, but not how young. If he is of adult age, I presume he has the right to be informed if his medical condition in privacy and that the mother, however nosy, has no right to any information he does not choose to give her. In the United States, at least, there are quite specific laws pertaining to medical privacy. Be prepared to be firm.

In our culture/society a mother tends to interfere. Legally you are right of course. She's so annoying, I just ask her to leave and check she's not eavesdropping.

But we need more time than that, maybe he'll start crying or something I need time for him.

 

PS

We have a nurse here who says that we should put all infections together and wanted it to place him in our cozy tuberculosis room. this woman is a menace.

[RubberAustria]

Reading other posts from you let me assume that you live in Greece. A nosy dominant mother seems typical for a rural area or an island there. Or he is registered as a refugee. Anyways if I am right this boy/young man lives in the EU. So good news- he will get a very good free medical service. Also you seem to take care of him. Thanks for that! Big HUG.

[PozTalkAuthor]

If he's not a minor, the mother should be sent away - "do your business, madam, leave him alone for a moment"... 

I had my best friend (now boyfriend) with me when I was tested 10 years ago but medical support has been very important. A doctor who told me the truth, told me that it's no longer a death sentence, meds stuff... And gave me the names of HIV-related support groups and psycho-therapy. 

I actually got depressed then, but this is not automatic it depends on the background (familiar, social). 

Most important: do NOT make him perceive you're anxious yourself. Be firm, be practical, empathy must not mean anxiety otherwise reaction might be stronger "if doctor in front of me is scared, why shouldn't I be?" 

If you feel to hug him, just do it; but... Being him ill with opportunistic infection means one thing only: he's been poz for many, many years, never tested! And this might also be a consequence of a too nosy and judgmental mother who thinks to do the guy's own good, causing bad things, then. 

I have no words for such a mother.

[Sharp-edge]

1 hour ago, RubberAustria said:

Reading other posts from you let me assume that you live in Greece. A nosy dominant mother seems typical for a rural area or an island there. Or he is registered as a refugee. Anyways if I am right this boy/young man lives in the EU. So good news- he will get a very good free medical service. Also you seem to take care of him. Thanks for that! Big HUG.

You are right about these. He will have his meds for free which is essential. And from my part, I will do whatever possible to help him (and any other person actually). He's a young man not a boy but his mother gets in the way. We have a "joke" about greek mothers prescribing antibiotics.

 

52 minutes ago, PozTalkAuthor said:

Most important: do NOT make him perceive you're anxious yourself. Be firm, be practical, empathy must not mean anxiety otherwise reaction might be stronger "if doctor in front of me is scared, why shouldn't I be?" 

If you feel to hug him, just do it; but... Being him ill with opportunistic infection means one thing only: he's been poz for many, many years, never tested! And this might also be a consequence of a too nosy and judgmental mother who thinks to do the guy's own good, causing bad things, then. 

I have no words for such a mother.

I'm not at all anxious about how well he's going to be. He'll be fine. I worry about how he will react to that, nothing else.

About the judgmental mother that's what we're saying too. Maybe he does things "in secret" due to all of the mother's behavior who knows.

The last time that we had a round (going around rooms all the doctors together seeing and discussing about managing our patients) she wouldn't leave the room. She said I wanna hear. I told her to leave and she was most displeased. I don't care of course, but she doesn't care either about leaving us do our job.

[PozTalkAuthor]

Threaten her to call the cops, such an asshole woman needs to be kicked in the ass! "I'm his mother", if he's no longer a minor she should no longer interfer. 

Let me say, after Covid, medical scene has become more and more difficult - even patients (or their relatives) making physical violence to doctors and nurses

and many social network based groups regarding bad health/justice, are inducing all this. 

I'm not in the medical environment but in tech, and I see the worst of the worst. If a parent does not trust science and medicine, their child is a slave

[VersGuyAnon]

4 hours ago, Sharp-edge said:

I didn't know it myself until quite recently, but you can't just start meds on someone with AIDS (because he was in the stage). You have first to make sure he is "clean" of any other infection and then administer, otherwise the immune system will start reacting bad to all these. so it's just for his pneumonia now, but his theatment will be okay I hope.

In order to help eradicate stigma, terms such as "clean" (even when used in quotation marks) must never be used. The closest suitable alternative is "clear", especially when referring to being clear of other infections. 

 

Edited January 13 by VersGuyAnon

[ErosWired]

7 hours ago, Sharp-edge said:

What I would like him to understand and I fear he won't because when the word hiv is heard bee wax fills one's ear for the rest details

You’re right - the term ‘HIV’ is a very loaded one. It’s like a big package full of things he’s going to receive, and he’s going to have to unpack it and see what’s in it for him before he’s ready to move on to the next package. What you can do is help him unpack the big package.

When you say, “Your tests are positive for HIV”, you then go on to say, “and this is what that means, and doesn’t mean.” Don’t leave his brain to process it on his own - guide him through his reaction. Keep him thinking through it, not feeling through it. The time for feeling will come after he’s armed with the information he needs to fight against irrational fear.

Stand your ground with the mother. The young man needs to see that example set as well.

Edited January 13 by ErosWired

[fisterm8]

16 hours ago, Sharp-edge said:

Half the people don't wanna be the ones who will draw blood from him.

Thats terrible behaviour from so called medical staff.......have an avenue of support looked out for the young man incase his mother rejects him and makes him homeless (assuming he stays with her)