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When Doctors Say Don't and the Patient Says Do
NYTimes ^ | 10/29/02 | MARC SIEGEL

Posted on 11/01/2002 7:35:32 AM PST by RJCogburn

The woman was 93 and still tap-dancing. In her 20's, she performed for a professional touring dance company. In her 30's and 40's, she taught dance at Juilliard. For the 50 years since then, she had tapped eagerly at amateur shows and recitals.

When she arrived at my office complaining of weakness and pain in her arms and legs, her only concern was that she would no longer be able to tap out a rhythm.

I was concerned that she might be suffering from polymyalgia rheumatica, an inflammatory muscle condition common in the elderly and partly treatable with steroids. But her blood tests showed that this was not the case. The tests showed just the beefy unfettered corpuscles and the clear blood serum typical of a much younger patient.

She looked much younger than her age. Her smooth features seemed related to the years of careful physical conditioning and diet. Still, as she began to have more trouble walking, I sought an explanation consistent with some degenerative pathology or other. I ordered a set of M.R.I.'s of the entire spine. The extensive imaging discovered a bulging disk in her neck, tissue so inflamed that it encroached on the space intended for the spinal cord, the crucial superhighway of the nervous system.

There was not supposed to be a decision to make. In a younger patient, a controversy occurred when the cord was compressed, but not enough to interfere with bowel or bladder.

A surgeon might favor surgery, while a nonsurgical neurologist might say that because some of the damage to the cord was irreversible, Why take the chance of scarring and inflammation from the surgery? On the other hand, doing nothing meant living with the unremitting pain, not to mention leaving the spinal cord vulnerable to further damage.

In patients older than 90, there was no disagreement. It was hard to find any doctor who would recommend corrective surgery when the statistical risks at advanced age of a postoperative complication or poor outcome were so great.

But this time the patient herself insisted. Even when the risks, including paralysis, were explained to her, she simply replied that tap-dancing was her life.

"Can the surgery make me dance again?" she asked me.

"It's possible."

"Then I'll take my chances."

As her heart and lungs were healthy and she was in such good physical condition, I was able to find one of my hospital's top neurosurgeons to take the case.

I could not come up with a good reason to deny her this referral, though I made my reluctance plain. The statistics were not on her side. Still, given her remarkable determination, I found myself rooting for her to dance again.

The day before the surgery was scheduled, a routine blood test found a low sodium count. That meant an automatic delay because of the increased risk of seizure from low salt. Plus, the low sodium could be caused by dehydration, which would be compounded by blood loss during surgery. That sudden aberration before surgery seemed to be a warning that something else might go wrong.

I ran several tests but was unable to be sure of the cause of the low sodium. I was ready to cancel the operation. But the woman, who had already been admitted to the hospital, still insisted that she wanted it done without delay. She admitted to not drinking or eating properly in apprehension of the surgery. So I decided to treat her for possible dehydration, ordering saline solution intravenously.

The sodium condition was corrected. The surgeon saw the corrected lab data and decided that it was safe to go ahead with the operation the next day.

Afterward in the recovery room, seeing her awake and smiling and moving her arms and legs, I first considered that she might have made the right decision. The best medical decisions were made not just on the basis of scientific analysis, but on a clinical gestalt, a knowledge of an individual patient. And sometimes it was the patient who knew how to balance the risk-benefits better than the doctor.

Weeks later, she arrived again at my office, not with tap-dancing shoes, as I had imagined, but unaided, without even a walker or a cane. She was calm and pleasant, and I could see her vitality starting to return. She was already walking better and feeling stronger than she did before the operation. As if to underline her full recovery, her blood tests were all normal, including the sodium, an indication that she had truly been dehydrated before surgery. Any other cause would not have gone away for good with just saline.

"You see," she said, "we patients are not just statistics. We don't always behave the way studies predict we will."

That was as close to saying, "I told you so," as she would get, and I realized how much more self-congratulating I might have been if the roles had been reversed and I had been the one to recommend the operation.

It was too soon after the surgery to know whether she would be dancing, too soon for me even to bring up the question of it.

But when I received my invitation to her recital several weeks later, I could just imagine the justified smile on her face.


TOPICS: Culture/Society; Miscellaneous
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1 posted on 11/01/2002 7:35:32 AM PST by RJCogburn
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To: RJCogburn
Sometimes you have to be firm with your doctor and TELL them what you want done, or not done.
If it becomes a problem you may want to find a different doctor.
2 posted on 11/01/2002 7:40:18 AM PST by Just another Joe
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To: Just another Joe
YUP....what we need are more "bad" patients - patients who question, cajole doctors......they are the healthiest people.
3 posted on 11/01/2002 7:42:58 AM PST by goodnesswins
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To: RJCogburn
That is really awesome... What an inspiration.
4 posted on 11/01/2002 7:50:29 AM PST by Freedom2specul8
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To: RJCogburn
Doctors must be managed.
5 posted on 11/01/2002 7:54:56 AM PST by Mark Felton
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To: Mark Felton
as long as she understood the risk and was willing to take it.....fine...if she got infected, paralyzed, died......
well then the family would of course would not have invited him to the recital but I'm sure would have invited him to a Morbidity and Mortality conference, followed by a really cool deposition, and then some really, really, really neat meeting with the medical staff review committees and finally arbitration or trial..

I love stories like this. Cause we all know that doctors are dumba$$3@ that only want your money.

the fact is that the doctor took the risk WITH the patient. She seemed competent and should have been allowed the surgery, but I think he got very lucky.... and the patient had a good outcome.. congrats to the patient and kudos to the surgeon.

6 posted on 11/01/2002 8:12:01 AM PST by Dick Vomer
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Comment #7 Removed by Moderator

To: RJCogburn
It is VERY important for people to TAKE RESPONSIBILITY FOR THEIR HEALTH, and not hand it off to a near-stranger. Today, many people have the idea that the medical industry has their best interests at heart, just as the believe that the talking heads on the alphabet-soup networks are telling the truth. Some doctors are trained to treat SYMPTOMS. They specialize in interpreting test results and writing prescriptions.
8 posted on 11/01/2002 8:34:34 AM PST by redhead
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To: RJCogburn
Lets say that this had ended up badly, which, statistically speaking, for a 90 year old, is probably what would have happened. These doctors would have had their pants sued off.

I am all for patients taking responsibility for their own care, but they also need to take responsibility for their decisions as well. Of course, when there are lawyers involved....

9 posted on 11/01/2002 8:38:32 AM PST by Paradox
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To: Paradox; Dick Vomer
What do you want to bet that the patient was required to sign a waver?
10 posted on 11/01/2002 8:46:28 AM PST by Just another Joe
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To: Just another Joe
A waiver?

"Members of the Jury, my client, a frail 90 year old woman, was not of sound mind when she signed that waiver. How many 90 year olds would YOU trust with your life?"

11 posted on 11/01/2002 8:53:01 AM PST by Paradox
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To: Just another Joe
What if you TELL your Dr. you would rather die, what then? I believe in euthenasia. Sue me.
12 posted on 11/01/2002 8:54:40 AM PST by Hildy
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To: RJCogburn
Doctor: Does it hurt when you do this?

Me: Yes.

Doctor: Then don't do that.

13 posted on 11/01/2002 8:58:08 AM PST by Hatteras
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To: Hildy
What if you TELL your Dr. you would rather die, what then?

I don't know about anyone else but I don't need a doctor for that.

14 posted on 11/01/2002 8:59:22 AM PST by Just another Joe
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To: Paradox
How many 90 year olds would YOU trust with your life?"

Practically every one of them that I know that are not living in a 'retirement' home.
The question should be, "How many 90 year olds would YOU trust with their OWN life?"

15 posted on 11/01/2002 9:01:16 AM PST by Just another Joe
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To: Just another Joe; Paradox
Paradox is quite right. A waiver is barely worth the paper it is printed on.
16 posted on 11/01/2002 9:05:59 AM PST by Amore
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To: Hatteras
That is just what the doctor in Spain said to me - I said, "it hurts when I bend down." He said,"don´t bend down."

I think that is a universal doctor joke.
17 posted on 11/01/2002 9:22:23 AM PST by acnielsen guy
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To: drphil
" if the surgeon refuses she can shop around. Problem is, govermental health care has taken price competition out of the equation. You get the same fee if you operate on a 90 with multiple co-morbidites or a healthy 30 year old."

I agree. That is what I mean by "manage". Hire them and fire them if need be.

I don't know why I would let one man assume responsibility for my health when I would not fully trust one man to care for my car.

It takes interaction. It requires education on the part of the patient and questions from the patient. I can understand a doctor who says he "does not know" or once to try something different (because a previous course of treatment did not work) but I cannot stand a doctor who will get defensive when I ask questions.

18 posted on 11/01/2002 9:26:34 AM PST by Mark Felton
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To: Mark Felton
"once" = wants (hhhmmm...still having brain cramps mebbe I need a new doctor)
19 posted on 11/01/2002 9:28:43 AM PST by Mark Felton
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To: Just another Joe
And if things don't turn out as well as the insistent patient expects, hire a lawyer and sue the doctor. With these controversial cases, it won't be hard to find a plaintif's expert to say that the surgery was not indicated.
20 posted on 11/01/2002 9:39:56 AM PST by joonbug
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