Patients should be taught to be 'defensive patients,' just as drivers are taught to be defensive drivers."
The words are those of an experienced medical reporter -- and sometime patient and often friend of patients -- recognized by her state's medical society as a fair and accurate observer and critic. Married to an outstanding physician, she saw him through an ultimately fatal battle with cancer and, now retired, often "looks after" the medical problems of members of his family and hers and, also, older friends as a sensible Good Samaritan.
She sends us some examples of the need for patients to be intelligently defensive:
"Doctors often want to do tests for their own edification, tests that will do nothing for the patient except possible damage. My husband had persistent hiccups in his last weeks, and there were some questions in his internist's mind as to whether a surgical procedure had caused it. The surgeon wanted to go in and look -- an endoscopy a look through a long tube .
"But when my husband asked, 'What good will it do me if you find anything?' the surgeon had to admit, 'None,' since no further surgery would be possible.
"He refused the test."
"Now his brother has cancer. When he was hospitalized to place a feeding tube in his abdomen, he had an endoscopy which apparently did some damage, no actual perforation of the esophagus but at least some scraping. He came out of the anesthesia with intense gastric pain.
"The surgeon said it was because of his 'ulcer.' But he had never had an ulcer. The pain finally let up, with Maalox, etc. "Then the surgeon scheduled another endoscopy to see, he said, 'if it is an ulcer or cancer.'
"I insisted that he refuse it. His cancer had already metastasized to his lungs and elsewhere, so if it was more cancer, they could do no surgery. The surgeon simply wanted to see if his team had caused some problem during the first endoscopy.
"Great for teaching, but another endoscopy could have caused further trouble. And he already had enough."
"When my father first went into a church home, the internist who treated him there started giving him Benadryl because he had a tremor in his hands when he ate. The fact was that he had a familial, an inherited, intention tremor [one that occurs or worsens when one uses the hands], and it was worse in a new situation, with new people.
"The Benadryl made him so sleepy that he couldn't do anything but eat and sleep -- he had never taken any drugs for the tremor before -- and the tremor got worse now. I asked the doctor to stop the drug, and he did. The tremor lessened as my father got used to his new surroundings."
"This over-medication of the elderly is a sad thing. I know so many instances where people are given sedatives just to get them to bed early and make them sleep through the night, when they don't really need the medications.
"An aunt of my husband's sleeps perfectly well when she goes to bed at her usual time, which is 11 or 12. The nursing home gives her a strong sedative at 8 p.m. -- they want to get all the patients asleep before the night shift comes on. Then she wakes up around 4 a.m. because she's slept out and agonizes until it's time to get up."
The lesson in all these stories:
Ask doctors "Why?" "Is this really necessary?" "What will this do for me?" Ask for yourself and for those who can't ask for themselves.
A story of a doctor who changed his mind. A reader reports: "A good friend of mine was diagnosed as having a very serious and rare form of cancer. She was referred by her internist to a surgeon for what would have been extremely delicate surgery.
"Being quite sophisticated and well educated, she asked about the possibility of being referred to the National Institutes of Health [NIH in Bethesda] for treatment, only to be told by her internist that he didn't know of any work of that nature there. What's more, he actually discouraged the idea.
"Shortly afterward, when a science publication fell into her hands at work, she found out quite by accident that there was indeed a research project of this nature at the National Cancer Institute at NIH. The notice she read sought applicants with her kind of cancer.
"The day before her scheduled surgery she managed to get an appointment at NIH, and also managed to get her records from the hospital and her doctor's office -- not an easy thing. She was admitted to NIH later that day. She underwent extensive and complicated surgery of 12 hours' duration there, with follow-up radiation. She believes she would not be alive today were it not for the advanced treatment she received.
"But here's the punch line. While recuperating at the NIH hospital for four weeks after surgery, she ran into her doctor -- the internist -- accompanying a member of his own family being treated there for, you guessed it, cancer.
"He said something to her about 'little did I dream the last time I saw you that someone close to me would become ill with cancer,' and finally he said, 'You did the right thing.' "
Should a patient with a serious illness seek to "go to NIH"?
Virtually all patients admitted to the NIH hospital -- the Clinical Center -- become part of a research study where one kind of treatment is compared with some other kind, or sometimes no true treatment at all. NIH and other research doctors are not allowed to perform such studies unless they truly don't know which course is most effective. And patients must sign an "informed consent" form saying, usually, that they are willing to be randomly assigned -- without their own choice -- to one part of the study or another, so the researchers can learn which course is really better.
This is fine for some patients. Since no one knows what course is best, it does not reduce their chances and they are assured of close attention for the length of the study and follow-up, which can sometimes mean some years. There is no charge for treatment. Some patients do report that the Clinical Center seems to be a bit short on nurses and other health care workers. Research treatments are expensive, many patients are very sick and need a lot of attention, and budgets may not permit more than the necessary nursing care -- not as much as some patients would like for comfort.
As for me, I might in such a situation -- I don't really know -- want to go to one or more well-regarded doctors and say, "I know no one's sure what's best in my case, but, given the present state of knowledge and your experience, what do you think is best for me?" Doctors, in short, may sometimes be right when they say, "I think something other than NIH is best for you."
NIH regularly seeks volunteers for its studies. Many are publicized in this section's weekly Calendar. In almost all cases, patients are admitted on a physician's referral. Doctors anyplace in the country can call NIH to ask about referring someone, and NIH will send physicians a pamphlet describing all current studies. The NIH referral number for physicians is 496-4891. The information number for patients is 496-2563.