Tell me everything or tell me nothing

[Rich_by_the_Bay]

When I read this.... I thought this was a no brainer...So far, the poll results have shown this to be true...

Me, too, until this post in this thread - Nanannjen expressed an alternate view which surprised me, so as someone who spends a lot of time informing patients about their maladies, I thought I'd do a reality check with a poll.

 

[FIRE'd@51]

There's another issue here if the doctor doesn't tell you. We all know how applying for health insurance works these days. Health insurers pretty much take your word on the application to save costs, then investigate your records more thoroughly when you need an expensive procedure. If the doctor doesn't tell you about something and you honestly omit it on the application, what if the health insurer gets the doctor's records and it is in there? Then they deny your claim because it's a pre-existing condition, or even worse, cancel your insurance for lying on the application.

 

[Rich_by_the_Bay]

Another risk in "don't ask don't tell" is that there is a duty to inform the patient of the potential for progressive vision loss, signs and symptoms to look for, etc. I can imagine some sort of vision related accident where the patient claims they never would have undertaken driving/flying/dangerous machinery, etc. if they had known their vision will likely diminish even over years.

I guess in the older days, the patronizing expectation was that the doc knew best about what to reveal and what to hide. I don't feel comfortable with that.

 

[Texas Proud]

Me, too, until this post in this thread - Nanannjen expressed an alternate view which surprised me, so as someone who spends a lot of time informing patients about their maladies, I thought I'd do a reality check with a poll.

Oh yea... I read it earlier and was wondering about it also... but the voting is going 'our' way...

 

[kaneohe]

There is a possible consequence after cataract surgery which you can read about here.
Nd:YAG laser posterior capsulotomy for cataracts

I was told about this possibility by the doctor after the cataract surgery but before this happened so it was no surprise. Short painless outpatient procedure.

 

[Nords]

I don't feel comfortable with that.

We don't either...

 

[Ed_The_Gypsy]

This stems from the recent cataract thread.

Sorry, I didn't see that.

My eye-chopper tells me I have a water cleft--which is apparently in the category of cataracts.

I will be having in Intra Ocular Implant (I think it is) later this year. When I can take time off work.

I have great expectations for it as a friend had the same procedure last year. He also tells me that it is not as miraculous as he first thought.

I gather that in about five years, some kind of scarring or other opacity will develop in the back of the envelope that holds the new lens and they will have to blast the back off with a laser. It doesn't matter. My vision in that eye is materially impaired today. I will take what I can get in the way of improvement.

 

[GoodSense]

Another reason I would want the doctor to tell me now about the condition and how soon it will progress is that I can schedule an operation on my schedule. I have pretty good health insurance now but that may not always be the case. I would be pissed to find out later that it was something I could have done when I had good insurance but didn't, and ended up paying the full price.

 

[Ed_The_Gypsy]

I guess in the older days, the patronizing expectation was that the doc knew best about what to reveal and what to hide. I don't feel comfortable with that.

I have the same feeling.

By the way, I have been told that in the Far East, Oriental doctors will not tell a patient that they are going to die (for example), but they will discuss it with the family. Of course, this is cultural, so everyone understands when this is happening.

I want it straight, and I want the right to decide for myself.

 

[Amethyst]

I want to know everything, immediately. Unless it's something horrible, about which little can be done, and then I want to remain ignorant as long as possible.

By the way, what was that about inhaled steroids causing cataracts? I've used fluticasone about 6 months out of every 12 since 1994 - helps me cope with seasonal allergies. Nobody said anything about causing cataracts! I think I would have noticed something like that if it was mentioned in the package insert.

 

[CuppaJoe]

I went to about six eye doctors before one told me the whole story: although my eyes look brown they are technically green and he could see that I was born blonde. It's good to know that.

 

[TromboneAl]

I've waited a week before voting, to think about it. If there's definitely nothing I can do, I don't want to be told until just before I'm going to notice something. For example, if I am not going to experience any symptoms at all for five years, I want four years of not knowing.

I used to be a "tell me all" person, but after some experiences with a brain tumor (DW) and bone tumor (DD), I'd do anything to avoid that experience of waking up in the morning, and suddenly remembering the bad news.

Maybe the results would be different for different scenario (more serious problem with no cure), but for me, I've learned that sometimes...

Ignorance is bliss.​

 

[toofrugalformycat]

I'd want to know, for sure. Knowledge is power.
But I'd want it in writing. When people get bad news at the doctor's office, they often blank out.
I think of my mother who would not understand or remember the specifics, but she could show the written material to someone who could explain it to her. Fifteen minutes is not enough to explain anything, especially to someone without any background knowledge or education.

 

[Rich_by_the_Bay]

I've waited a week before voting, to think about it. If there's definitely nothing I can do, I don't want to be told until just before I'm going to notice something. For example, if I am not going to experience any symptoms at all for five years, I want four years of not knowing.

I used to be a "tell me all" person, but after some experiences with a brain tumor (DW) and bone tumor (DD), I'd do anything to avoid that experience of waking up in the morning, and suddenly remembering the bad news.

Maybe the results would be different for different scenario (more serious problem with no cure), but for me, I've learned that sometimes...



Ignorance is bliss.

Thoughtful reply. In my experience, it is usually a little more complex than whether you can do something about the diagnosis or not. Rather, many people crave the knowledge for reasons of knowing their prognosis and life planning.

If I knew you had advancing cancer for which there was no treatment available, I have to assume you would want to know that so you could set your affairs in order, make peace however you needed to. Failure to disclose only to have it disclosed much later is might be perceived by patients as a betrayal, even if it didn't have material consequences. Many patients feel they have a right to know, which I sort of agree with.​

Part of most physicians' education includes classes in "breaking bad news." One technique is to present the information in the most basic terms only, such as saying something like, "This is a very serious disease" and then waiting. If the patient asks more, you give more. If they don't you refrain. Sometimes they need more time, sometimes they really don't want to know.​

Tough calls.​

​

 

[TromboneAl]

for reasons of knowing their prognosis and life planning.

Right. My answer is only for something about which I can do nothing, and would not change my behavior or choices if I knew.

Let's say it were something serious -- say a genetic test that shows that in 10 years I'm going to get a serious debilitating disease which will cause a lingering death with a lot of pain. It would be nice to be ignorant of that for a few years at least, but I'd sure want to know so that I could up my withdrawal rate in that situation.

This reminds me of a friend or ours who had Huntington's Chorea in her family. She was about 25 and fine, but when genetic testing became available, she had the test done, and it showed that she would get it. She quit her job and moved, and we never saw her again. She's certainly dead by now.

 

[Rich_by_the_Bay]

Let's say it were something serious -- say a genetic test that shows that in 10 years I'm going to get a serious debilitating disease which will cause a lingering death with a lot of pain. It would be nice to be ignorant of that for a few years at least, but I'd sure want to know so that I could up my withdrawal rate in that situation.

We're all so different. If I knew I had only 10 years (even moreso if I were younger), I might well forego some delayed gratification such as retirement saving, full- v part-time work, insurance, living near kids - whatever, in order to optimize the things I cherish in those last 10 years. Personally, in most scenarios I can envision, I'd rather know.

Genetic counselling is a little different, but that's for another thread.

 

[Martha]

Genetic testing for a disease that you can do nothing about? I wouldn't do the test. What's the point.

I recently heard part of a public radio program. A guy was talking about what to tell and not Alzheimer patients. Not about their illness, but about other things. For example, do you tell he person that their spouse died when they are not going to remember it 15 minutes later? The guy gave a sensible answer. You tell them once. They have the opportunity to grieve. But if they ask about their spouse later, you don't tell them again, you lie if necessary. Why have them live the death over and over?

If I had Alzheimer disease, I would want to know that I was getting the disease. But after things got bad I would want people to lie to me. If I think I am a happy foreman in a factory (as a friend's father thought), don't tell me I am in a nursing home. Play along a little.

 

[bbbamI]

I recently heard part of a public radio program. A guy was talking about what to tell and not Alzheimer patients. Not about their illness, but about other things. For example, do you tell he person that their spouse died when they are not going to remember it 15 minutes later? The guy gave a sensible answer. You tell them once. They have the opportunity to grieve. But if they ask about their spouse later, you don't tell them again, you lie if necessary. Why have them live the death over and over?

If I had Alzheimer disease, I would want to know that I was getting the disease. But after things got bad I would want people to lie to me. If I think I am a happy foreman in a factory (as a friend's father thought), don't tell me I am in a nursing home. Play along a little.

I couldn't agree more.

When DH's father was in the last stage of Alzheimer's, he would ask for his mom and dad. My MIL would tell him they were dead. This would make him grieve just as much as he did when they died. It was new...and a shock to him. She didn't do this on purpose to hurt him...she thought she was doing the right thing.

I told her we should think about the fact that he is ill and perhaps we should not tell him negative things. So, when he asked for them again...and again...we would tell him they had already gone to bed, and we would see them soon...then he would be content.

 

[TromboneAl]

Genetic testing for a disease that you can do nothing about? I wouldn't do the test. What's the point.

You might not be able to do anything about the disease, but if you know you're going to die young you can adjust your spending accordingly (up your withdrawal rate).

 

[kumquat]

You might not be able to do anything about the disease, but if you know you're going to die young you can adjust your spending accordingly (up your withdrawal rate).

And, in the case of Huntington's and other genetic anomalies, decide if you want to risk passing it on to kids.

 

[JOHNNIE36]

This is a no brainer!
I was told 2 years ago I could be a glaucoma candidate down the road, and my doc is rigorously following up on that with annual tests. He told me if I experienced any vision or physical changes, come see him IMMEDIATELY.
I already know what my treatment options will be.
So far so good...

Yeah, me too on the glaucoma. It was discovered about 20 years ago that one optic nerve is a different size than the other. Doc says not a problem unless the odd one changes size. So far, it never has changed. I go an opthamologist for the checks but it is considered a medical problem and not vision. In addition to the regular type eye exam, he gives me a Humphries(sic) vision field test. Covered by my regular health care plan. He has never told me what the solution is to the problem. IOW, what do you do if you get glaucoma?

 

[mews]

IOW, what do you do if you get glaucoma?

Meds
surgery sometimes
give up caffeine

ta,
mew

 

[TromboneAl]

This NBC News story was relevant (early testing for Altzheimer's risk -- "Would you want to know?"):

NBC Nightly News with Brian Williams: News and videos from the evening broadcast NBC Nightly News with Brian Williams: News and videos from the evening broadcast- msnbc.com

 

[vicente solano]

Regular medical check-ups.

Why do I have the impression that the majority of you guys go and get regular/routine medical check-ups? Not me. I only go when something PERSISTENTLY really is bothering me. And even so....

 

[bbbamI]

Why do I have the impression that the majority of you guys go and get regular/routine medical check-ups? Not me. I only go when something PERSISTENTLY really is bothering me. And even so....

It's easier to take care of a problem that is just beginning than to endure the pain and procedures when the problem has elevated.