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When is it okay to be in-the-know? When is it okay to be left in-the-dark? (OR Medical Diagnoses)
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I'm confused, too. Isn't that between the patient and the doctor, not the patient's family? I would want to know EVERYTHING as regards my own body and health, and I would be furious to have a doctor withhold such information.
BunWat wrote: "How on earth is the doctor withholding the diagnosis from the patient? Isn't that both unethical and illegal? Is this person under age, of diminished capacity? WTF? "
That was my thought too Bun, why is the information being withheld from the patient?
That was my thought too Bun, why is the information being withheld from the patient?
It's not illegal if a release of information is signed. However, I don't understand how it's possible for this person to be kept in the dark on the most recent diagnosis/finding. It would seem that if a son or daughter would know the information, then, at the very least, the patient should know - this person is NOT unconscious, this person still has full faculty and capacity in the brain and is capable of making decisions as to what would be best for them.Okay, a bit more information - this person is 84 years old. This person has signed all the necessary paperwork (i.e. filled out a release of confidential information, possibly signed a proxy note I would guess - which I've done before) so that the son will be privy to any and all medical care and decisions.
The son is the one who made the decision to keep the additional diagnosis from his parent.
BunWat wrote: "I wondered if the person was elderly. I really very strongly dislike it when elderly people are treated as if they were children. I think its disrespectful."I completely agree with you on that point, Bun.
I've never been involved in a similar situation, Heidi, but I would be very angry if a diagnosis such as that was withheld from me.
Okay, more clarification (but this is where I stop on revealing info) - the person with the diagnosis is an 84 year old woman... a feisty-as-all-get-out woman. She's a fighter. She always has been... adding to my disappointment in her son's decision.
BunWat wrote: "I would also. At the same time I would be really hesistant about getting in between a son and father. I don't know that there is a good answer here. "
Maybe I misunderstood, but it sounded to me like the son was given the right to know the information, but did the father give away his right to the information? I still feel the doctor has the obligation to inform the patient.
Maybe I misunderstood, but it sounded to me like the son was given the right to know the information, but did the father give away his right to the information? I still feel the doctor has the obligation to inform the patient.
Jim wrote: "BunWat wrote: "I would also. At the same time I would be really hesistant about getting in between a son and father. I don't know that there is a good answer here. "Maybe I misunderstood, but ..."
It was the mother...
I guess that's one of my questions here - IS there a form that makes it legal and binding and absolute to withhold that sort of information from the patient with his/her consent?
If she is still her own guardian there is no way her family should have been told instead of her. HIPAA laws are supposed to make it so that things like that don't happen. I suppose someone could give an express written order to the doctor to withhold bad news from themselves, and instead give it to a specific named person.
http://www.hhs.gov/ocr/privacy/
I guess that was my contention too Bun that they must have signed away their rights, but it doesn't seem right.
This is more than ethical question, Heidi. It's a matter of law. Do we have an attorney in here?
I hit send before I was finished, because what SarahPi said is right.
Oh, I'm familiar with HIPAA and everything that goes with it... v. familiar (as in we still have to adhere to it, even in research). People around here get several standard responses from me in regard to inquiries about a loved one -
"I have no idea who you're talking about" (a blatant lie, but it stops the inquiry so I can let the person know someone's asking about them... and give them an opportunity to sign a release if they want to sign one)
(said with smiles) "Awww now, be fair. You KNOW I can't share any information about anyone in our studies without a release of information... so whether or not this person is or isn't in our program, I couldn't tell you anything if I wanted to... HIPAA."
And when they get really ugly with me (on the rare occasion), "I'm not interested in paying a fifteen thousand dollar fine, sorry... can't help you."
I've just never heard of anything like this since HIPAA was enacted.
I think this is disgraceful! I get upset with Richard and his brother because they withhold lots of their medical stuff from their Mom because she is such a worry wart. But they've been babying her for decades! As a matter of fact, they didn't tell her I had MS, but my sil blabbed it out, and my mil was OK with it once I spoke to her. But this is far far worse, because this is about the medical situation of the mother herself! If she does have another tumor, then the treatment needs to be different, and if there is no treatment then by god this woman needs to know. Firstly, why should she be going thru the lung cancer therapy when there's more cancer?!?! Chemo and radiation are AWFUL already. If she's gonna fight, then let her fight it all.
But even worse, if the prognosis isn't good, then this woman needs to know, so she can start preparing and accepting for her own death.
Ooof, I'm really getting upset because this is incredibly disrespectful.
I wouldn't treat my mother that way. No doubt.
*sigh*I just keep thinking that there MUST be something huge I'm missing in all of the information that I do know because I know her kids (the ones who are still alive) love her very dearly and I can't imagine them doing something so disrespectful - it makes me wonder how well I really know them, though.
This is really interesting. I'm definitely on the "want to know" side. You can't treat people like little kids in this situation. I honestly can't think of one scenario in which I'd want information to be withheld. That is all.
Do you think they are withholding the information because they are afraid she will just give up if she finds out about the other tumor?My best friend's niece was recently in a bad car accident which killed her mother. She is in critical condition and heavily sedated due to massive burns and other injuries. Whenever she regains consciousness she asks about her mother. The family just keeps saying "she was badly injured and needs your prayers." They are afraid that if she finds out her mother is dead she will just give up. But it's been almost a month now! This is obviously not really the same for a lot of reasons. This person is a minor (she's 17) and it's not my family. But I guess I'm saying I have a problem with the general idea of lying to someone about something so crucial, so central to their life. That part is the same.
Gretchen, your reasoning is what I've been thinking over as well. Especially if the treatment is exactly the same. That's just horrible about that girl. I'm not sure what I would do in that situation, especially if the girl was driving, the guilt might injure her into permanent coma.
She was in the driver's seat but not driving. They were broken down on the side of the road.
Gretchen, wow. That's an incredibly sad and tough scenario... and yes, the situations are v. similar. This elderly relative of mine IS conscious, though - she was in Texas with her sister over the weekend visiting family - she's still ambulatory and still working.It all kind of makes me think of the time I was superbusy working on my senior project at the end of the semester of college and had given everyone a heads up that I would disappear for a few days, but not to worry about me. My grandfather died - my mom had to make the decision as to whether or not to let me know and she decided that it didn't do any good for me to be there at that moment and it'd just distract me from what I was doing... she let me finish the project before she told me the news. I missed his funeral. I kind of understand her dilemma, but my sister was furious with her for not telling me. It was too late for me to do anything about it, so I didn't hold a grudge against her - she did what she thought was best for me whether or not I agreed... I was able to grieve for and honor his loss when his wife died a couple of years later and they were buried side by side. THAT was intense and surreal for me. I didn't expect to be grieving for both of them.
Maybe not appropriate in this thread, but for some reason Anthony's response to this made me think of a conversation that's featured in the movie Dakota Skye - while sitting on the edge of an overlook, Jonah asks Dakota if they were to decide to jump, would she want to fall face up or face down... face up, enjoy the ride while it lasts... face down, and you know what's coming and when it'll happen. She said face up. He said face down.
I don't know how I'd answer that question.
You know, now that I think about it, I know of a situation similiar to the one Gretchen's describing...a woman's son and husband were killed in a car accident and they waited a week to tell her because she was in the hospital and not quite cognitively there yet...I guess that's the best way I can put it...so I agree, there are exceptions I hadn't considered.
Neither of those is the same thing as Heidi's situation, though. In both of those cases, they are withholding information about someone else. In the case Heidi described, they are withholding information about the individual, while telling her family members. In addition to the legal questions, the ethical ones should definitely be considered. If she is her own guardian, she has the right to discuss her treatment plan and change it accordingly.
Good point Sarah, unless they are mentally incapacitated they should be notified, so that they are making the decision.
This is also quite a burden to put on someone else.
This is also quite a burden to put on someone else.
Okay, my only thought that could make this okay is if she has told the doctor, or her kids, I don't want to know. Otherwise, I think it is very uncool.
I wondered how she was doing, Heidi.and exactly what Bun said in message 2. WTF!!?!?
It's her body, she needs to know.
It could be her expressed wish to not know. Not everything is paternalistic.
Bellsy, I think you're the only person who knows the backstory on this. I've had a bit more time to think on this and I've decided I'm going to encourage my mother to encourage the son to talk to the doctor. It's not HIS job to inform her. But it is the job and responsibility of her physician.
I feel okay with my decision on this... and realize I may not get what I want... and I can accept that, too, because then I know I did all I can in good conscience to try to see that the right thing is done.
We could sit here and make up scenarios all day long, but until we are actually face to face with such a decision, we do not know how we would act. AIDS took almost all my friends before I turned 30 years old. Many of them refused to even hear their test results. "I'm sick, I know I'm sick. Why do I need to hear more depressing details about how sick I am?" My begging them to go to the doctor made no difference to them. I heard many times. "I will not be an experiment for the doctors."
Some people do not want to know. If they are already deathly ill, why add more on top. At what point does it become sadistic?
I realize the above post has nothing to do with Heidi's situation, but some people just do not want to know. Wow, this has raised painful memories. Where's that polar bear? I'm getting one of my own.
:-)
That Heidi. She's a mature one, even if she does act strange in pictures on FB.
Oh I wasn't bitching at you Bun. The whole thing just got me to thinking about all the friends I buried while we were all so young. My 20s should have been fun, they were unspeakably sad. I was never a bar fly, they were. It took me ten years of survivor guilt to get myself back to normal.
I'm so sorry, Stephen. That must have been a devastating time for you.
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I COMPLETELY disagree with the family withholding the diagnosis - I think it's unethical for the doctor to share the information with a family member (apparently a release of information was signed for that family member) and for all who are privy to this information to keep it from the person who it directly affects.
In fact, now I'm kind of livid about this. I'm especially upset that I know this secret and I cannot tell this person something I feel they have a right to know.
What would your thoughts be on this? Any of you ever experienced something similar? Maybe I'm missing a key piece of information or experience which may make their withholding information okay in my book.