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Posted 5/9/2010 4:59 PM (GMT 0)
Hi Folks:

This post is really not specifically about PCa...rather the point that many of us make repeatedly about assertively managing your own health care by being informed and involved.  A couple of months back I suffered severe pains in my side and passed out.  As it turned out, after every imaginable test, it was nothing more that a very severe muscle spasm -  probably brought on my doing too many tasks on my "honey-do" list for that day.  Anyway, I was fine.

However, I did spend a couple of days in the hospital investigating what was going on.  There were two specific incidents that brought the "informed and involved" practices to bear:

1.  On my second day in the hospital the cardiologist on duty proundly came into my room with a solution...I needed a pacemaker.  This was despite the fact that all of my cardio tests showed my heart was in great shape.  When asked why he felt a pacemaker was needed he replied that my heart rate was low so I needed a pacemaker to speed it up and regulate my heart beat.  After some prodding, he revealed his reason for his pronouncement - he had "studied" my resting heart rate since I had been admitted and it was around 60 beats/minute.  I promptly told him that my normal resting heart rate was 58-62 beats and had been for the past 40 years...in fact all my docs have told me that was great as it reflected on my exercise regime.  After being told this the cardiologist sort of slinked out after saying, "Oh....".  We did get his business card...guess what he specialized in?  Yeah...placement of pacemakers!

2.  On my second night in the hospital the nurse woke me up and told me it was time for my meds.  I told her that I don't take any meds then questioned her about what she was trying to give me.  The first was a baby aspirin...ok, so I took that.  The second was Pepsid AC because hospital food frequently gives patients heartburn...ok, so I took that.  The third was a med to lower my blood pressure....hold on...so I asked if my BP had been high since I had been admitted.  The nurse checked and said no...my BP had been great.  So I asked why in the world would I want something to lower my BP and she said it must be a mistake and she wouldn't take it if she were me!

The moral of the story is pretty clear...

Cheers,

Tudpock

Posted 5/9/2010 5:09 PM (GMT 0)
Vey interesting and helpful observations...
Posted 5/9/2010 5:11 PM (GMT 0)
Don't get me started ....

Question EVERYTHING anyone in a white coat tells you.

And if you absolutely MUST go to a hospital, make sure that at all times you have someone there to advocate for you, someone who will literally get in the face of a doctor if that is what it takes.

Zen9
Posted 5/9/2010 6:11 PM (GMT 0)
I agree with Zen, even if the hospital has been named one of the best in the world.
Michael
Posted 5/9/2010 8:55 PM (GMT 0)
This isn't tunnel vision, this is economics affecting human behavior.  Our health care system has perverse financial incentives, where doctors are paid more if they do more tests and more procedures.  Many ignore these influences, but it takes a strong and ethical person to chose to do what's right for the patient, even if it will lower their income.  The systems needs to be redesigned to reward docs for doing the right thing, and getting a good outcome.  This might sometimes mean advising patients that they don't need the latest high tech procedure or test, event if people expect it.

Until the system changes, the next best thing is to go to a doctor who's on salary, and makes the same money whether or not he puts a pacemaker in you.

Posted 5/9/2010 9:31 PM (GMT 0)
What's really scary is that this is common practice. My wife was undergoing Chemo for breast ca 5 years ago and over 50% of the women in the infusion center had either been misdiagonosed or given the wrong treatment by their original doctors. There were a lot of horror stories being told.
It's unfortunate that medicine tolorates these doctors. Always get a 2nd opinion on any major procedure or DX.
JT
Posted 5/9/2010 9:37 PM (GMT 0)

I think this situation has been true for a LONG time. A surgeon wants to do surgery, etc. etc. etc.

This brings up another point. I strongly believe that it is ESSENTIAL for every patient to have a strong advocate, if possible.

When my Dad was in the hospital years ago, he started acting crazy after surgery. We knew it was due to the high-level painkillers. Anyway, they just kept giving him more and more of that stuff. His wife is a retired nurse, and she INSISTED that they stop all medications. They finally did and after a very difficult night, he was finally his mild-mannered self.

My mother-in-law was in the hospital a few years ago. She was scheduled for an endoscopy. That day, a few hours before the scheduled procedure, they brought her lunch. We really had to insist that she not eat lunch. (Had she eaten, they would have had to postpone the procedure). I was amazed how the nurses insisted she have lunch as there were no contrary orders.

Mel

Posted 5/9/2010 9:39 PM (GMT 0)
I don't think we can ignore the liability financial angle here either. Many tests, many procedures, and much money is spent covering a doctor's butt from lawsuits.

If Tud had blacked out again after he got home and hurt himself, or someone else, and it was determined that he in fact had a syncope episode, even tho it was a new development since he returned, Tud could find himself a percentage based lawyer, and sued for a few million. (not that Tud would)

Truly, our whole system is out of whack.

ON the general topic, I try to treat doctors, lawyers. and auto mechanics in a similar fashion. Before I visit them, I try to determine the problem, or at least narrow it down, and tell them what I want them to do.

Just glad you were conscious Tud and could challenge him. May have been different if the decsion was put on your spouse or kids.
Posted 5/9/2010 10:49 PM (GMT 0)
This is exactly the kind of hospital, doctor, nurse, health care worker bashing that I hate seeing generated here. I am sure all these examples are true, but isolated. There are thousands upon thousands of good, honest doctors, surgeons, specialists, nurses, etc, that work from the heart and provide excellent and loving care. Yes, I really believe that statement.

Remarks like these do a disservice to all those people and facilities that dedicate their time and resources for patients like us. A few bad apples here and there shouldn't discount this fact.

David in SC
Posted 5/9/2010 11:03 PM (GMT 0)

Life,   you are lucky to live through it.....

Posted 5/9/2010 11:12 PM (GMT 0)
This is why the Amish people are wiser than you might have thought, they avoid the doc$.

Have witnessed enough to convince me of what really goes on in the jungle medical world, good luck to all of us...we will need it.

Posted 5/9/2010 11:22 PM (GMT 0)
David:

If you want to put your head in the sand, be my guest. Yes, the majority of doctors are caring, competent, and hard-working. But some have graduated at the bottom of their class, and even good doctors make mistakes.

I stand by my statement that it is CRUCIAL for a hospitalized patient to have a strong advocate looking out for him. The examples I posted are totally true and not THAT unusual.

Mel

Posted 5/10/2010 12:04 AM (GMT 0)
Hmmm, Lets see, thats part of people having to sell what they are selling

1) Your car is acting up, you bring it to a mechanic, suddenly you need thousands of dollars of work done, but do you really ?

2) Go to an attorney for a consultation ( about anything) . Dollars to donuts they recommend you file a lawsuit, oh and please leave a retainer

3) Go to your dentist for a routing cleaning, gee did you not know you have filling that is coming loose and it needs to be redone ?

Its all part of people having to not only be experts in their fields but they need to generate business
Posted 5/10/2010 12:20 AM (GMT 0)
I haven't seen too much bashing here, pretty much just factual cases. If you look at a bell curve of doctors, it's pretty obvious not all will perform at the same level. Just like every other profession, there are those who are in it for different reasons, among those reasons is financial gain, to some it is the main reason.

I think Mel is spot on. We must have advocates for us. In some ways, insurance companies have become a primary filter by refusing to pay for some procedures based on need, We almost need a new category of health care worker who is like a broker, or agent for us, insuring that we get the correct care at the correct price , for the right reason with quality of life issues taken into account.

Hummm.
Posted 5/10/2010 12:47 AM (GMT 0)
I think this kind of incompetence, or basically, not doing one's job, is rampant in american society, in all professions. And yes I do think it is a recent phenomenon, as in the last 20 years. The technology has improved so much, yet the humans who operate it are getting laxer and laxer IMO. Haveing said that, you do have to give credit to the true professionals. I dont consider it bashing, just think the trend is there, and don.t see the pendulum moving very quikly back. As in most things, you have to be your own advocate. Don't think the old timers, Who dont even learn about their illness's, just trust their Doctor, will change. In spite of it all, remember, these are the good ole days
Posted 5/10/2010 2:15 AM (GMT 0)
Mel, I have never been against the advocate aspect of this conversation or topic, you are putting words into my mouth. All professions and crafts have good guys and bad guys.

And my head is not buried in any sand as you state.
Posted 5/10/2010 2:35 AM (GMT 0)
Ouch. No one who is active enough to be on this board with this disease is even close to having his head in the sand.
I'm not sure that we need to go get "advocates", but I do agree it is important to carefully consider our treatments, and be aware.
Posted 5/10/2010 2:50 AM (GMT 0)

I42:

I'm talking about having an advocate when you are unable to make clear decisions.

You might be in the hospital doped up on medication. You need someone looking out for you, preferably a loved one. That is SO IMPORTANT!!!

This is, of course, in addition to having advanced directives in place.

Mel

Posted 5/10/2010 2:54 AM (GMT 0)

David:

I gave two examples of where it was very helpful to have an advocate. When you term the factual statements I made "doctor bashing," then you have your head in  the sand.

Mel

Posted 5/10/2010 3:01 AM (GMT 0)
Actually, Mel, in my original response to this thread, was addressed in general, not to you, I wasn't answering anything you said directly, as it was Tud's thread and original post. And my feelings on the subject, was not limited to the answer in this one thread only, but a theme I have seen from time to time here at HW.

Not sure where you picked up that I was answering you directly. I have no reason to doubt your examples, or anyone elses answer here in particular.

You aren't usually this hostile, so not sure why you are being this way now. We may simply have to agree to disagree on this exact subject, and I don't have any problem doing so. Can you offer the same courtesy?

David in SC
Posted 5/10/2010 3:10 AM (GMT 0)

I am courteous. I didn't accuse anyone of "doctor bashing."

I understand that you made a general reply to the thread, but that included my posting too. You might want to specify a particular post if you only had that one in mind.

Anyway, this thread is far from hostile. (the poker newsgroup I frequent gets very political and the hostility is immense, although I never take political writings on a newsgroup that seriously).

No hostility felt here, but I certainly have some strong opinions on the subject.

Since my main point pertained to having an advocate, I'm not sure that you and I really disagree that much.

I'm sure we can disagree without walking on eggs!

Mel

Posted 5/10/2010 8:10 AM (GMT 0)
This seems to be a bit of a US problem, though the suggestion about dealing with salaried docs avoids some of the risk.

It is however not so much about getting the treatment right as getting the diagnosis right.
You shopuld also not do too much self diagnosis.
If you go to the doc and say you think you've got something the matter with your heart as you're having bad chest pains etc then the risk is that you get referred straight to a cariologist.
If you go to the doc and just say that you've got chest pains then the good doc will ask the right sequence or gropup of questions to ascertain if it is heart, stomach, liver, muscles or whatever so that you don't get passed on to the wrong person.

As an example. A female neighbour of mine in her sixties with abdominal pain was quite reasonably referred to both gynaecologists and gastro specialsts and had tests and was put on medications and diets etc and even biopsies all to nop avail, then finally someone suggested a neuro and it was discoverred that she had a very small slipped disc that was trapping a nerve and making her feel pain in her abdomen when there was not actually anything wrong in her abdomen. Hard to point the finger of blame in this situation.

As for things like being given the right meds etc when in hospital that is down to strict procedures and checks. In Holland they are very strict. Every time I was given anything even if it was the same med by the same nurse I had to give my name and date of birth and it was checked against the full set of notes that followed me everywhere. For each of my RT sessions I have to hand over my hospital ID card when I enter the room and my data including a very recent photo pop up on computer screen on both sides of the machine as well as in the control room.
When they did a full blood cross match before my RALP everything about my samples and ID and the labels was double checked by two senior nurses. (And these tests were still done by the hospital even though I used to be a blood donor and have the documentation to identify my blood group etc)

In the past things were different but wasn't that to a large extent due to surgery being less safe, yes a surgeon likes to do surgery, but he used to be more cautious about doing it all the time as there was a higher risk of loosing a patient. You also have a different attitude from doctors if, like my father, they are physicians that do surgery as they will consider more than just surgery (my father was also a gynaecologist and had a great reputation as a diagnostician, which he put down to good training, and that clearly helped.)

But I don't think there are many, if any, docs around who can ignore the bottom line: those type of docs now tend to be found working in the voluntary sector charities etc.
I don't want to keep saying too much about my dad, but these days people cannot comprehend that for twelve years he used to work one day a week UNPAID as a clinical assistant gynaecologist.

Yes be alert and informed, but don't get paranoid.
And don't have unrealistic expectations, nobody and no system can ever be perfect all the time and some systems can never be perfect. Doctors simply can't cure everything.

Just off to RT number 10
Alfred
Posted 5/10/2010 1:11 PM (GMT 0)
Everyone is a "little right" on this subject and my post was not about bashing. While most staff are courteous and professional, it only takes one or two bad ones to see someone you care about suffer. It is a profession that is overworked but it is also a profession where burnout occurs and they need to move on just like a burned out teacher, etc.

When my wife had breast cancer and needed a bed pan it took them over 30 minutes to get there and I buzzed 2 times and went to the desk one time. When she finally arrived she apologized and said they had taken the bed pan to the wrong room. The veins were popping in my neck and my poor wife said, "Michael" and I walked to the end of the hallway to calm down. I will never leave a loved one alone in a hospital, just my nature.

Michael

Posted 5/10/2010 2:10 PM (GMT 0)

Purgatory,

compiler is not being "hostile" to you, not even close.  This board is devoted to a discussion of cancer, thus no surprise that feelings run high and opinions are strongly held.  Not every post is going to be met with hugs and kisses and flowers and candy.

Everyone on this board, including me, wants to see you back on your feet, re-employed, and in the Zero Club.  But do you not see that every time you start a new thread entitled "Another Emergency" or something similar, you undercut your own argument?

Zen9     

Posted 5/10/2010 5:22 PM (GMT 0)
zen, i don't appreciate or need your condenscending remarks, most of my remarks about blockages, etc, are not the result of anything wrong with the medical system, you should be clever enough to realize that. I am not into the blame game and conspiracy theories, I deal with reality as it hits me, and then try to make the best of it, and to adapt to the rest of it until it can be resolved.

so not under cutting any argument.

And nobody is saying or asking your smart remark about "not every post is going to be emt with hugs and kisses and flowers and candy" Why don't you say what you are really thinking?

Remarks like that to me just puts your name in the column of people that I know really don't give a crap in their hearts, and so be it.

It's definitely about time to vacate this place for good.
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