Also relevant, from the above source (bolding mine):
“(2) when risk disclosure poses such an immediate and serious psychological threat of detriment
to the patient as to be medically contraindicated Social policy does not accept the paternalistic
view that the physician may remain silent because divulgence might prompt the patient to
forego needed therapy. Rational, informed patients should not be expected to act uniformly,
even under similar circumstances, in agreeing to or refusing treatment.”
Some of this debate may hinge on culture. When I was studying Traditional Chinese Medicine, the teachers who used to work in China would tell us that over there, they would not tell the patient what was wrong, even (especially) if death was immanent. They’d outright lie, tell the person they were on the road to recovery, and send 'em home with their children or parents who knew better. Our American born and bred teachers jumped in very quickly to redirect, asserting that that is NOT how we do it here, for the reasons **XJETGIRLX **quoted from the AMA above.
It’s entirely possible, sure. When my son had spinal fusion surgery at 11, he specifically asked me NOT to tell him “everything”. He wanted me to be his filter, to talk to the doctors about prognostics and plans and what-ifs without him in the room. Because he *asked *me, I was happy to do it.
This points to the grave importance of having conversations with your family and then putting this stuff in writing. If you know you’re the kind of person who doesn’t want to know stuff, then make sure anyone and everyone that might be conversing with a doctor on your behalf knows that. And if you haven’t had that conversation before Something Bad happens to you rmother, then asking gentle questions along the lines of, “what would you like to know?” or “Would you like the doctor to talk to Son and he’ll figure out what’s important for you to know right now?” The *default *assumption in this country and this day and age should be - and is - informed consent. Anyone who wants otherwise bears the onus of making that known, just like anyone who wants a DNR order needs to make that known.
All that being said, if the rest of the staff was on board enough not to have mentioned the word “stroke” for more than a week, the RT did really put his foot into it. If it was agreed upon by the medical staff, then it should have been charted with red flags and balloons, and he should have watched his mouth more carefully.
“All information need not be communicated to the patient immediately or all at once; physicians should assess the amount of information a patient is capable of receiving at a given time, delaying the remainder to a later, more suitable time, and should tailor disclosure to meet patients’ needs and expectations in light of their preferences.”
A history of psychological problems and panic attacks in response to bad news certainly seems like a valid reason to delay full disclosure to a later, more suitable time, your vitriolic insistence to the contrary notwithstanding.
I think the ethical issue in this situation is not whether withholding information from patients is right or wrong, but deciding unilaterally to withhold that information. Patients certainly have the right to refuse information about their illnesses. But this shouldn’t be assumed. The ethical lapse I see in this situation is the family not asking Mom first. If you are certain she’s not going to want the info, what harm is there in asking? Not doing so is condescending, IMO.
I think this is entirely reasonable. However, it does lead to the question of when they were going to tell her. Nine days into the illness, awake and aware enough to freak out when the news broke, and facing an imminent trach…surely a quiet moment could have been arranged and the information could have been broken more gently? Putting it off is a set up for a breakdown in communication. Were they going to wait until they were doing the pre-op consent or sending her to a rehab home for physical therapy? The longer you are in a hospital, the more people become involved in your care, and the more likely someone is going to screw up and accidentally spill the beans. This should have been dealt with in some fashion sooner.
You are missing the point; they may believe they have every reason in the world to delay telling her, but they DIDN’T BRING HER IN ON THE DECISION. Family members, well-meaning or not, can’t make that choice unilaterally, especially when the patient is awake and aware. Additionally, the pulmonologist was clearly not her PCP, may not have been involved in her daily treatment, and may not have been informed of said unilateral decision. There is no reason to assume that he was aware Washoe’s mother had psychiatric issues, or that they’d decided to keep her in the dark about her condition, because it’s simply not a typical situation.
This happens every day in thousands of hospitals all over the world. That’s just the way it works.
I certainly hope so. Nobody is supposed to discuss diagnosis with a patient without authorization. Even the fresh-out-of-adult-school-nineteen-year-old LVN who handled her admission paperwork had more brain cells than Dr. Bedsidemanner. When she needed information about my mom’s DNR status, she pulled my wife into the hallway and asked “is she a no code?” That’s how it’s done.
We just got back from the hospital. Mom is still zonked out from the lorazepam she had yesterday morning. There was no attempt made to wean her off the vent today, because she wasn’t conscious enough. So thanks again, Dingleberry. You may have cost us an entire precious day. I mean, Qadgop is totally right. I should have been rubbing their faces in it from day one. I fucked up royally. This is a lesson I will never forget as long as I live. So thanks to QtM, I’m not going to the BMQA. Dingleberry’s still going to get a piece of my mind in a week or two when I cool my jets a bit, though.
There’s still hope. My mom’s O[sub]2[/sub] settings are down to about 22—that’s almost room air, and tidal volume is about half a liter. She’s breathing on her own a little bit, so knock on wood.
So what is the respiratory therapist/pulmonologist (I’m unclear on exactly who he was at this point) there for? Simply to check machines, or prepare her for extubation, or what? Is your problem that he said anything at all, or that he included the word “stroke”? Would it have been okay if he had said, “‘we’re doing out best, but when a person has had an **incident **this big, we just take it day by day,’”?
I’m hoping to be a nurse soon, so I really am interested in how this could have been handled better for you. I wish you all the luck in the world untangling this mess, really I do.
I’m not a physician, but as a biologist with the potential for patient contact, I’m required to go through a fair amount of ethics training. I can understand not telling a patient the full extent of their injuries while they’re still woozy, but not even telling a patient WHAT THE HELL IS WRONG WITH THEM FOR NINE WHOLE DAYS goes against everything I’ve ever thought, and every ethics class I’ve ever taken. The various physicians who have posted in this thread seem to agree that it’s at the very least highly unusual.
I realize there are exceptions to every rule, and every patient is different, but I really think that you’re making the wrong decision here. Have you considered how debilitating being treated like a 4-year old really is? Have you thought about what THAT might be doing to her mental health? That’s a genuine question, by the way - I’m not trying to be snarky.
Anyway, you never answered my question - how do you obtained informed consent for a procedure when the patient isn’t informed?
Whoa, WHAT? You get to decide whether or not she gets life saving treatment without her consent, or any kind of written transfer of medical decision making power? And you think this is APPROPRIATE?
*For those who don’t know: “DNR” stands for “Do Not Resesitate”, i.e. if mom stops breathing, should the docs try to save her or just let her go?
Washoe, I think you’re being blinded by the idea that you have your mother’s best interests at heart. Part of the reason that so many people are horrified by the idea of the family being able to unilaterally cut off a patient’s access to medical information is that many, many families do NOT have the patient’s best interests at heart or do not have the same interests as the patient. A family may want to keep you alive on machines long after your brain is gone, or you may be keeping medical information private from them (anything from HIV status to irritable bowel syndrome), or they may want to get at your will earlier. There are any number of ways in which a patient and their family may be at odds, and it’s totally uncool for the family to just be able to say “only tell her what we want her to hear, because we said so.”
What I’m trying to say is that, while you may mean only the best, her decisions are not the same as your decisions, and she has the right to make those decisions even if you disagree with them.
The only person you should be “confronting” on this when all is said and done is yourself and your wife for making some extremely poor choices, and setting up a fragile house of cards that any well meaning, busy doctor not clued into your stage play could have toppled over. If you want to play these “don’t tell the patient” games a working hospital is not the place to do it.
Where on earth did you get the idea that we were making that decision for her? The nurse asked my wife what my mother’s prior directives were concerning a situation like this, and my wife told her. If the nurse had asked my wife what my mother’s favorite color was, and my wife responded “purple”, would you be accusing my wife of making that decision on her behalf?
I’ll get back to you on the other question; I must have missed that or read it and wasn’t paying attention.
Okay, that’s cool then. Since by your own description, you’ve been making all of her other medical decisions for her lately, and you specifically approved of the DNR conversation being held without her, I naturally assumed that you were also making that decision. If you were just relaying her previously stated directives, I have no problem with that.
They are two separate individuals, both of which just happened to pull bonehead moves that night. Sheer coincidence. The RT came in after the pulmonologist. Generally, technicians are supposed to do the most work on the first round of their shift, so that it sets a static picture of a situation at that given time. He should have checked vent settings, checked tube placement, and listened for breath sounds. Then he should have charted. He did none of these things; he just looked at the monitor and walked away. This may be acceptable procedure at that institution—we’ll find out later. Right now we’re more concerned about getting her off the vent if possible.
The pulmonologist should never have discussed this in front of a patient. All he had to do was step out into the hallway to talk about it, and there wouldn’t have been an issue.
And that’s what stymies me. My mom was out cold on propofol when the LVN came in to get information. You could have set her feet on fire and she wouldn’t have even blinked. And this teenage girl still had the wherewithal to know that the proper thing to do was step out into the hallway. I hope she goes far in life. Dingleberry would do well to take a lesson from her.
But had your mother been conscious at some point before that? Was she able to communicate at any point prior to that? If/when she was conscious, did you or the medical staff specifically ask her if she wanted to know what was wrong with her? Did anyone ask her if she wanted you or anyone else to be responsible for making decisions about her medical care? Because if the answer to these questions is ‘No’ then you fucked up.
My mother wanted my Dad and I to be there as her advocate because she knew she wouldn’t remember or might not understand everything, or hell, might not even think of what kind of questions to ask. BUT - the important thing is that she was informed and involved in the whole process. The doctors spoke to her about her situation, and explained to her what the complications and treatments were.
She trusted my father and I to make decisions for her but she was given the opportunity to make that choice and she had to give specific written consent to do so. There was a form in her charts with our information in it and authorization FROM MY MOTHER to provide us with information about her care and let us take part in decisions about treatment.
If your mother was not given the choice to make this authorization for herself, then you, and every doctor and staff person in that hospital fucked up. I don’t care if “that’s how it’s done” it’s still wrong. There was a case recently where a patient died in a hospital from neglect because nobody had ever bothered to place a feeding tube or check up on who was supposed to do it. Everyone just assumed that someone else was taking care of the situation, or that the patient was being treated appropriately. Just because the nurses and doctors up to this point have gone along with your little game doesn’t make it the right way to handle things.