My mother had a fairly serious stroke two weeks ago this Sunday. She’s now in the ICU at Kaiser-Permanente in Woodland Hills, California. Up until last night, she was making steady and tremendous improvement. We got the tPA to her within the three hour window, and it seemed that we had every reason to be optimistic about her prognosis. We knew that she is a psychologically fragile person who is easily frightened and prone to chronic anxiety. So we were very, very careful not to tell her that she had had a stroke. We just told her that “you fell down and bumped your head” and that “everything is going to be OK and we’ll take care of you.” We weren’t going to reveal the full extent of her condition to her until she had at least been moved out onto the floor and started on antidepressant therapy. She’s on a vent, but she was slowly being weaned off it. We are getting a little nervous about time, because she has been intubated for nine days now, and time is running out—if you don’t get somebody off a vent in two weeks, they usually have to be trached. But we were hopeful, and we were doing a great job of blowing sunshine up her ass. We stayed by her bedside for hours on end if she wanted, and always made sure she knew that we weren’t abandoning her.
Then the dumbfuck pulmonologist walks in last night and fucks everything up. Basically, he said “we’re doing out best, but when a person has had a stroke this big, we just take it day by day. We’re trying to wean her off the vent, but in a few days we’ll have to do a tracheostomy.” My wife’s jaw just dropped. She said that in 15 years in the ER at Cedars-Sinai, she had never seen anybody pull anything that asinine. And this is a woman who told me that she had once overheard one of the attendings condescendingly lecture a failed suicide victim on the proper way to blow his brains out. I almost decked him, but the prospect of losing my own license restrained me. My wife told me later that she looked over at my mother and saw sheer panic in her face. We stayed an extra-long time last night, and for the first time, she cried when we left, instead of just smiling and accepting our reassurances that we would be back the next day. Two hours later, she had a massive anxiety attack and had to be given lorazepam. She had another one this morning, and had to be sedated again. So thanks a whole fuck of a lot, asshole. I’m definitely going to have a word with the BMQA when all this is over. My wife thinks he may have blown our chance to get her off the vent, and we both know that she won’t last long if she’s trached. With her propensity towards depression, her will to live will be nonexistent, and it’ll only be a matter of months before pneumonia does her in.
I won’t even get started on her RT or her primary night nurse. That will have to be a topic for a separate post. But my wife is furious at the RT for blowing off his responsibilities. The very first round on his shift, all he did was look at the monitor and walk out. He didn’t check her breath sounds, vent settings, or tube placement. We’re calling the respiratory supervisor on Monday to see if that is acceptable procedure for that facility. If it isn’t, we’ll raise hell. And if he charted that he did check breath sounds or anything else, then it’s back to community college for his worthless ass. Hope he enjoys the CIS department or the welding curriculum. Grrrrr… Alright, this has already veered way too far into TLDR territory, so I’ll just shut up now. I need to go sharpen my talons for Monday anyway.
Honestly, for the medical staff to be in a position where they can’t be honest with the patient due to the family forcing them to feed her bullshit, is not very good for them either. I have sympathy for your mother’s physical condition, but all of y’all need to face facts. How do you expect her to do the work to recover from a stroke without knowing that it is a stroke she is recovering from?
Yeah, I agree. I know you’re in an emotional state right now, but did it ever occur to you that her anxiety might have been increased by the realization that her family was lying to her, and if they are, it must be WAY more serious than she thought? Maybe in this case it’s better to try to face reality together as calmly as possible and start talking about recovery strategies; after all, the cat’s out of the bag, right? So are you wanting to risk MORE tension and stress by angry confrontations with hospital staff right now? Isn’t your mother’s well-being most important right now? Deal with the hospital staff later; right now your mother needs you.
Hospitals do it all the time. It was totally our fault for not spelling it out for them in big red letters on her chart, but not telling a patient the full extent of their injury before they’re ready to hear it and strong enough to accept it is perfectly normal policy. Just a few minutes ago my wife told me that there was once a patient at Cedars who was not to be told that he had cancer. The family was waiting for the right time to tell him. It was in his charts, and that’s the way it works—the staff didn’t tell him. Then one day, some knucklehead let it slip, and they guy immediately went downhill from there and never recovered. Time and place—it’s a fine art, and when you work in an acute care facility long enough, you learn to know when to keep your mouth shut.
OK, you’re angry; go shoot some guns or something, but BE THERE FOR YOUR MOTHER. What’s done is done. I’m not saying you AREN’T being there for her, but I’m not sure what good some kind of tirade against the hospital is going to do for her at this point.
Oh yeah, don’t get me wrong—I’ll fry the little potatoes later. Mom comes first. My wife can handle the RT—that’s her department. I’ll have a private word with dumbass in a week or two when mom’s condition stabilizes, but not before.
I’m sure you want what is best for your mom, and I’ve never worked in an acute care clinic, but if I ever found out that my medical providers were keeping information from me at the request of anybody at all, I would immediately get myself transfered to a different facility. You have the absolute right to control your own medical care, or refuse it as you will.
Likewise, I wouldn’t think that this kind of thing is legal. It’s called informed consent for a reason, and if the staff are doing procedures on her without it, they’re opening themselves up to a world of liability.
That said, if the hospital wasn’t able to maintain confidentiality, they should have told you up front. And they should be taking care of her breathing better.
What’s the legal position of the medical staff if the patient says to them, unequivocally, “I want you to tell me what is wrong with me”? It seems unlikely, in such circumstances, that they would be ethically or legally permitted to accede to the family’s desire for deception.
In that case, there’s no ambiguity. Patient’s wishes trumps family’s wishes. SOP calls for the patient’s private physician or primary care physician to handle the matter.
Post edit-window afterthought: also, bear in mind that “I don’t wanna know” clauses are very often written into advance directives by the patients themselves. A lot of times, it’s their idea in the first place. This wasn’t the case with my mom, but I’ve known her for almost half a century, and I know how she reacts to bad news. Dr. Dingleberry definitely fucked up all of our carefully laid groundwork.
I don’t know the answer to this: if I am in a similar situation, and my wife were to decide I shouldn’t be told, and I asked my doctor what was wrong with me, could my doctor lie or evade?
It seems to me that unless I’ve agreed in advance to surrender some aspect of my right to know, and if I’m conscious and aware, no one but me has the right to decide I can’t know what’s going on with my health.
Sorry to hear this happened. I was under the impression that it was unethical in the country for a doctor to keep a patient’s condition from that patient without the patient or health care power of attorney’s approval. As for Kaiser, well, they suck. They gave me prednisone last summer for a rash after I had been sick, only it wasn’t a rash. My GP, during my annual physical two days later, said it was obviously cellulitus and that I probably had endocarditis either already or made much worse by the prednisone. A few more days and God only knows how bad it could have been. I am not due to be back to 100 percent until mid year. Thank you Kaiser. Not.
No. This topic is one of the things that we physicians are tested on in our licensing exams, and we are taught that it is unethical to withhold information about the diagnosis from the patient even if the family thinks it’s for the patient’s own good.
(It is okay if the patient says “I don’t want to know”, but nobody else can make that decision).
As mischievous pointed out, how could a patient be giving informed consent to have any medications or procedures if they don’t know the REAL reason it’s being done?
In any case, this is an unfortunate situation and I hope that Washoe’s mom recovers soon.
It never fails to amaze me that people don’t have a clue that a lot of folks vent over the internet to get it out of their system before they have to gird their loins and Do the Right Thing back in real life.
People have the tirade here, in the Pit, so they don’t have it where it’s inappropriate to do so.
In general you are correct but there are some situations where exceptions should be made. Someone with psychiatric problems, as one example (and being prone to real anxiety attacks would fall under this) might need special handling. In some cases, delaying full disclosure of a diagnosis may be appropriate and in the best interests of the patient.
This is comparable to instances where family members are in an accident of some sort and not everyone survives. Relaying news of a death of a loved one may be delayed until the patient is deemed “ready to handle it”.
Then there are situations like we currently have with my mother, where even if we told her something we aren’t sure if she understands it or not. Should we attempt to tell her something and risk the very real possibility she can’t understand what we’re saying (and may thus get a very, very wrong impression of what’s going on) or tell her only what is absolutely necessary and no more?
Keeping information from adults of sound mind isn’t right, but when you’re dealing with severe injury and illness minds are not always sound. There are times you must account for that. These sorts of decisions are not at all easy.
It sounds like, in this situation, the abrupt revelation is interfering with getting someone off a ventilator which can have fatal consequences in the near future. If the news had been withheld until she was reliably breathing on her own the emotional shock would still have needed attention and treatment but would have been far less likely to be life-threatening.
In other words, yes, there’s a real possibility the doctor screwed up here and needlessly made a patient’s condition worse.
I just want to emphasize that I don’t normally advocate withholding anything, but the OP indicated that there were plans to put this woman on psychiatric medication for depression which indicates that yes, there is a real disorder involved and not just a family’s overprotection. Triggering an anxiety attack puts real stress on the body and the body does not need that after a stroke major enough to put someone on a ventilator.
There is also the fact that the statements as relayed indicate the doctor was talking about the patient in her presence as if she were not there or not aware of her surroundings. That is completely inappropriate. Even if a person does not appear aware and is not responsive to stimuli always assume they can hear you. In this case, the patient was, apparently awake, aware, and responsive so it’s doubly damning.