They’re talking about what’s medically ethical and appropriate; you appear to be talking legal principles here (and if I’m mistaken in that, apologies in advance).
The goal in a medical course of treatment i the best possible health outcome for the patient – cure, recovery, remission, stabilization, whatever. In this, psychological factors may play a major part, and the abstract concept of the patient’s right to know may be subordinated to an informed judgment as to when this particular patient can best deal with the truth about his/her condition.
Legally? Remember all those discussions about age of consent laws? Dude, you’re in the hospital with serious medical problems – there’s a pretty good chance you have impaired mental capacity, even if you* don’t think so.
My mother had a stroke back in September, and is also very emotionally fragile and prone to anxiety attacks. I cannot even imagine lying to her about her condition. That seems excessively cruel and condescending.
It’s frightening enough to be in a hospital after your body betrays you. It seems even more frightening to me to not know exactly why you are there. If she is at all conscious or capable of understanding where she is then she deserves as a basic human right to know what happened to her.
Information is power. If you had told her early on, then she would understand what happened and be able to adjust. Fear is fed and driven by the unknown. You’ve made the situation worse by keeping her in the dark and giving her a reason to be afraid.
People who suffer a stroke are already at risk for huge emotional fallout. It takes a huge emotional toll - depression, fear, anxiety - those are all normal reactions to such a huge reminder of your body’s fragile mortality. To add to that deception and betrayal from your family, the people who should be there to love you and support you and take care of you? I can’t even imagine how alone and frightened your mother must feel right now.
I’m sorry, but I see absolutely no way this is ethical or right, or ever seemed like a good idea.
That said (and I completely support the OP’s need and right to vent about this matter here), I don’t agree with the withholding of info from the patient. Vented pts tend to suffer from anxiety, period–I’m not saying this woman isn’t fragile or in need of more support than your “average” vent/stroke pt. What I’m saying is that her plan of care needs to be tailored to take her needs into account. The primary should be the captain of this ship. Chances are, though, the primary is deferring to the intensivist (and that’s probably a good thing), and the cadre of specialists are acting a bit like free agents. I used to work in ICU, and sometimes (not often), getting the docs on the same page re the family and the plan of care was like herding kittens.
Was the pulmonologist tactless and crude? Sure. Should he has talked with the family ahead of time? Maybe. When I first started as a nurse, there were quite a few docs (mostly older ones) who kept CA diagnoses from the female pts (always the women, IME, never the men). It’s wrong. It was patronizing and unethical back then and it still is.
It may be horrible for mom to find out that she’s had a stroke, but mom needs to know this sometime. As others have said here, finding out in the midst of rehab is not really better than finding out earlier. I would think for an anxious person, trust would be absolutely crucial–how can she trust you (the family) anymore when you’ve lied to her all this time about something so huge?
Does she have any underlying medical conditions that would prolong her time on a vent? A trach will not kill her–most pts do BETTER on a trach: the uncomfortable gagging/choking feeling is gone (because the tube is gone from the back of the throat) and trach pts are more mobile (ie up in a chair) and can have some PT.
I am sorry your mother’s going through this. The RT sounds like a numbnut who needs to be reported to his supervisor. The pulmo should have said what he needed to say in a more professional and courteous manner, but it did need to be said.
The last thing your mother needs is infighting amongst the specialists and an adversarial relationship with the family. Is there a pt liaison you can go to? And I would (IIWY) speak to the primary re your feelings of how your mother was told. The primary should be aware of your mother’s emotional state and should be able to address it, trach, vent or no.
It sounds to me like the pulm doc didn’t realize she hadn’t been told. As docs are taught that withholding information from their patient is unethical, this isn’t an unreasonable assumption. He’s probably not her primary doc, but has been consulted to managed her respiratory problems.
I agree - I think the family is being unethical not telling her. At the very least, someone should have asked her if she wanted to know before just assuming so.
He obviously didn’t break the news in the best possible fashion, but I doubt it was out of malice. Regarding the psych angle - that’s a very sensitive subject. There are specific procedures in hospitals for declaring someone incompetent to make decisions. You can’t just say “oh, she’s depressed/has anxiety, so the rules are different.” Psych patients still have a right to their own medical information, although I think docs should keep in mind they may need more time when you discuss health issues with them and more counseling. A lot of hospitals have patient educators, who can help in these situations.
It’s going to help Wash feel a little better. And speaking as someone who has nursed a terminal family member through ICU, the family also needs to keep their strength/spirits up as well. An ICU watch with a critically ill/frail family member is best taken as a team-relay marathon, not a sprint.
Washoe: I feel for ya bud. Get it out of your system. Scream, rant, kick the walls. Do what you have to do to get back on an even keel for you Mom.
I’m afraid I’m going to have to side with the doctor, here- unless there was something specifically in her chart, or you had had a conversation with him prior to the other night about your wishes that her condition be kept secret, then he had no reason not to be forthright about his concerns. Mr. Kitty was on a vent over the summer for almost nine days, and putting in a trach was a topic from day one (even though he was kept mostly sedated and probably had no clue what they were talking about) because of the severity of his situation. What were you going to tell your mom when the time came to put in a trach? “Oh, no big deal, this is a big positive step, don’t you worry your little head about it!”? Could he have been more tactful- probably. But you really can’t fault him for not knowing your mom was so psychologically fragile that she couldn’t hear the truth of her condition. IMO it’s better than the old days, when as a rule the doctors hid “scary” things from women because they assumed they wouldn’t be able to handle it.
My FIL had surgery on his carotid artery and then a double bypass. Twelve hours after his DB surgery, his wife of 54 years died. Not a one of us wanted to tell him because of his medically fragile state, but he was becoming MORE agitated by the assurances that everything was fine, perhaps she was just running a little late, etc., because he could tell there was something wrong by the look on the nurses’ faces. Mr. Kitty finally went in to break the news to him; FIL was so out of it that they had to have the conversation several times, and even then it took until the next day before he really “got” it. It was a horrible experience for everyone, but if we’d continued to allow the nurses/doctors to lie, it would’ve been significantly worse. Were I on a vent, unable to move or communicate, and I found out from someone who wasn’t blood related to me that everyone I cared about had been lying about my condition, I’d be TERRIFIED- not only by that revelation, but at the thought that they might be hiding something even worse.
When your mom is better and is able to communicate with you, the two of you should sit down to discuss how she wants things handled in the future, instead of you making a unilateral decision because you think you know what’s best. Also, that conversation should begin with you apologizing for treating her like a child.
If she is in such an emotionally delicate state that she either is or should be on psychiatric meds (which situation was pointed out in the OP) then I question if such knowledge should be dropped on her like a bomb. It was not as if they never intended to tell her, and it’s not like they told her she had, say, a common cold (which would be a very obvious lie) rather they did not disclose everything at once.
The problem is that anti-anxiety medications can take some time before they give their full effect. Withholding information for a few days and gently preparing a mentally fragile patient is not unprecedented nor is it some horribly unethical terrible thing. As I said, I certainly I do NOT recommend this sort of thing for most patients but those with a history of psychiatric problems could be an exception. Telling someone depressed and/or suicidal, or someone possibly in that state, something that can make them feel even worse has to be done with care and as gently as possible with the proper support in place. That did not happen with the person discussed in the OP.
Again, in the OP you have a person with a known history of panic attacks who is already in a fragile state. It is reasonable to assume telling this person the full truth will trigger an anxiety attack. Does it really seem like a good idea trigger an anxiety attack in a patient lying in an ICU in critical condition? Once more, this is a person with a history of abnormally negative reactions to situations including physical symptoms. You really think dropping the worst news this person has ever had about their health bluntly into their laps, no holds barred, at the very first opportunity and triggering a full blown anxiety attack is really in this patient’s best interests? Seriously? You don’t think that waiting until she is physically stronger, able to breath on her own, properly medicated, and having someone with some experience and sensitivity gently give her the full truth is better?
This doctor waltzes in, doesn’t even have the courtesy (apparently) to talk directly to a patient who is not only physically but mentally fragile, drops his bombshell, and disappears. At the very least the doc should have stuck around and taken the time and energy to answer the patient’s questions (difficult, if she’s on a vent, but not impossible) but instead just stomps in, drops his stinkbomb, and leaves the family to cope with the fall out. That is bad doctoring and horrible bedside manner. Even if the family is in the wrong here - which is a possibility as none of us other than the OP were there - that is NOT the way to break the news to the patient. You don’t walk in, say “hey, you had a big stroke, you’re fucked up, and in a couple days we’ll have to carve a hole in your throat so you can continue to breathe” and blow out of there for your golf game. If Mr. Big Shot Pulmonologist couldn’t be bothered to stay and deal with the fallout of what he said there should have been someone else, preferably with experience in dealing with depressed, anxiety-prone patients, there to assist the patient and family.
Of course, it might have helped if the family had documented in her chart somehow that this patient was mentally delicate and that the decision had been made to gradually tell her the full truth in a manner that would not put her at further risk. Maybe “we will fully disclose everything when she is weaned off the vent, or after a tracheostomy becomes necessary, but we want her to be as strong as possible since she has a history of depression, anxiety, and panic attacks” Or “administering XXX and XXX for Y number of days to prevent complications related to history of anxiety disorder, at which point full disclosure will be made”. For an analogy - normally you try to get people up out of bed and walking as soon as possible, but you don’t let them out of bed if that increases the risk of injury. You don’t force people to walk before they’re ready, and when you do finally get them on their feet you have people ready to catch them if you fall. Likewise, for someone with a history of psychiatric problems, you don’t just dump something like this cold on them. You make sure that telling them won’t cause further problems and you have someone there to catch them if they “fall”. You don’t do something that puts the patient at further risk, or if that is necessary, you make sure the proper support system is there and ready.
XJETGIRLX, you believe that withholding information temporarily (which is different than an outright lie) would be worse for you mother than not. I’m not going to question your judgment in regards to your mother. I’m not sure you should so hastily condemn Washoe’s judgment in regards her mother? Your mother and her mother are not the same people. There’s no way to know if one or the other is more “fragile”.
Washoe’s mother clearly wants her family around her while she’s in the hospital. When my mother had her stroke she wanted the exact opposite. Wow, people are different, who would have thought?
My mother also has a history of depression and anxiety and she has severe heart disease on top of it. My family has been there. We asked her doctors to do what was in her best long term interests, including how quickly to tell her things. We didn’t lie to her, but we didn’t march into her room, dump the whole mess on her lap, then turn around and leave, either.
Just after my father rushed my mother to the hospital for what would be her second heart surgery he had a bad car accident that totally destroyed the vehicle and knocked over a brick wall of the parking structure at the hospital (dad, amazingly, was OK). He didn’t tell mom that for two months. Her reaction? “You’re right, I would have worried myself sick. Thank you for letting me know now so I wouldn’t wonder where the car is. What’s the new one look like?” Oh, wow, mom understood. Granted, a car accident isn’t quite the same as one’s medical condition, but “not lying” doesn’t mean you data dump on a sick person every time you see her, either. Gee, I dunno, maybe Washoe’s mother prefers to get her bad news slowly, maybe the family knows this.
I am also assuming that the decision to delay full disclosure was made and shared with the medical personnel working with Washoe’s mother and there had been agreement on this course of action. Otherwise, I find it hard to believe no one else mentioned the word “stroke” to the patient over the course of nine days. If delaying disclosure was part of an agreed upon plan then Mr. Big-Shot Pulmonologist was, again, being a dick. If it wasn’t part of a treatment plan then it should have been.
One last time - if we were talking about a mentally normal patient it would be a different matter. But we aren’t. We are discussing a woman with a history of a psychiatric disorder who has just suffered brain damage. That is absolutely a factor in her treatment. It is ludicrous to think otherwise.
I just want to add that bobkitty’s recommendation for a heart-to-heart talk with mom about how she wants future medical revelations handled is excellent. If Washoe has had such a talk in the past it would cast a whole new light on the situation, wouldn’t it? If she hasn’t, it need to happen.
One of the few blessings with my mother’s half-century medical saga is that about 30 years ago she started telling everyone, repeatedly, exactly how she wanted things. She’s been carrying a DNR and medical directives around in her purse for close to 20 years. We know what mom wants and how mom wants it. We have, on occasion, shoved these legal documents under the noses of bastard, arrogant doctors. Who has the authority to make medical decisions on mom’s behalf is laid out in writing (dad, then my sister who is an MD, the me and my other sister). My dad has also made his wishes known and has a document laying out who has the authority to make medical decisions on his behalf. My husband and I have had discussions with each other about such matters. Knowing the other person’s views is very important, and makes already horrible times just a little bit easier.
You are making a LOT of assumptions in your post, but the most important one is summed up by the bolded portion above. You paint a picture of a doctor “waltzing” in, intentionally triggering a severe anxiety attack in his patient by “dropping a bombshell” on her, then leaving without any concern for the fallout from his actions. How on earth would a doctor like that stay employed? I would say that it is entirely possible that the primary care people (nurses, PCP, etc) may have been aware of Washoe’s desires and were following them, but that unless it was specifically in her chart- in an area that he would look in, because he’s probably going to be most concerned with the respiratory section- the pulmonologist probably didn’t have a clue. He assumed (like you did, only on the opposite end of the scale) that the family would have made the patient aware of the severity of her condition or at the very least that she was facing a fairly significant operation in about five days, and spoke accordingly. A bad assumption, true, but no less damaging than the one you’re making.
Also, it’s been fourteen days since the stroke, nine since the intubation. I understand that Washoe was trying to wait until mom was moved out of the ICU and “started on antidepressants,” but I just can’t help wondering how long they would have been willing to keep mom in the dark about her condition, especially if they wound up intubating her (which would necessitate an extended stay in the ICU, just to make sure she was stable). Three weeks? A month? If they started antidepressants right now, it could be two weeks before they fully kicked in. Is it really possible that every medical person around her would be able to avoid telling her she had a stroke for a month?
I’m not saying you’re wrong; indeed your post is insightful on a number of levels. But as I am fond of telling the kids at work: don’t attribute to malice what can easily be explained by stupidity. Or in this case, simply not being “in the loop” as far as the family’s wishes.
At this stage, if factual information is being withheld from the patient by family & primary physicians for what they deem to be good reasons, that situation needs to be clearly laid out repeatedly to everyone who contributes care for the patient.
As in: We’ve got a ‘special’ circumstance going on with this woman, which may strike you as ethically and legally inappropriate. But here’s why we’re doing it. Please follow along, and if you have concerns, please contact the hospital ethics committee chairman. Here’s his number.
A situation where physicians, whose primary duty is to the patient, are being told to withhold information needs lots of explanations, special handling, red flags, repeat reminders, and so forth.
The thing about white-washing this kind of stuff so people don’t worry is that they start to assume things are far worse than what you’re telling them, even when you’re being completely straight with them.
I live about 5 hours from the rest of my family, and my dad and both grandfathers are medically pretty frail. So everybody tries to reassure me that things are fine, so I won’t get worried and come haring home for every little thing. Except that I find out later things weren’t really so fine. So when someone actually admits that things are kind of serious, it scares the living shit out of me. I mean, if “everything’s fine” means they’re considering putting Grandpa in the ICU, “they’re talking about maybe putting Grandpa in the ICU” must mean I should make sure I’ve got something appropriate to wear to a funereal and have a bag packed to leave at a moment’s notice.
The first time they admitted things were kind of serious with my grandfather’s cardiac issues, I was frantic. I worried and fretted and stewed and pestered DoctorJ for reassurance and speculation about what was really going on that he finally scrounged up a phone number for my grandfather’s cardiologist and called doctor-to-doctor to find out the situation. It turned out they were actually telling me the whole story that time, but I wouldn’t have taken their word for it.
This is all a load of bullshit. There is no reason to keep information about an individual’s medical status from them if they are a mentally capable adult. No matter how you spin it, the OP’s behavior is unethical and deceptive. Regardless of any mental illness or psychological issues she may suffer, she has a right to know what is happening to her. Granted, you want to be careful not to overstate the hazards or threats but to just flat out not tell a grown woman what happened to her is completely despicable.