A Difficult Patient

Anyone over the age of 60 can remember when your doctor was someone who took the time to carefully listen to you, make a diagnosis with minimal tests, and was someone you trusted to make the best decisions for how to treat your condition. Well, perhaps you are one of the fortunate few who still has physicians like that; however I and many of my family friends and patients are having very different experiences in the past 20 years. We have found that we have to double check whatever our doctor diagnoses, and whatever they recommend for testing, and treatment of the condition. We are having to stay well informed on medical conditions as well as their testing and treatments. Then be very assertive in telling doctors what we know and what we will and will not agree to do.

I discussed this with my cardiologist who recently retired. He said that medicine changed with the advent of managed care, insurance companies that do not want to pay, a rash of frivolous malpractice lawsuits, and arcane standards of medical record-keeping. He said that all of that left little time for  spending time listening to patients, carefully making diagnoses, and considering which overwhelming number of new medications pushed by pharmaceutical reps were actually the best. He retired early because he refused to give in to the new way of practicing medicine. His medical group was pressuring him to spend a maximum of 10 minutes with each patient, prescribe more expensive tests, and push more drugs. He retired instead.

Don’t trust a diagnosis if your intuition is telling you it might not be correct. One recent example of that is a woman who recently told me how her physician gave her some very invasive, expensive tests and diagnosed her as being allergic to an overwhelming number of foods. She not only endured these tests, but had to go on such a restricted diet she decided to just take her chances on eating the healthy diet she had been eating before the tests. Nothing happened to her, so she sought a second opinion. The new doctor reviewed the tests she had done earlier and informed her that the tests she had were not even for any food allergies, but instead were for allergies that were common to most adults. She had mild seasonal allergies, but no allergies to any foods.

Many years ago I was diagnosed as being in irreversible brain death; but went on to get a Ph.D. anyway. Many years later I was given 5 minutes to live in the emergency room; but 6 weeks later went back to a very demanding job in a famous institution, and received promotions year after year.

Medical testing is another area in which to do your homework. Being type 1 diabetic it is almost impossible for me to fast from eating with any safety; so I refused a colonoscopy. I then found out that there was an alternative that was completely non-invasive and involved no fasting. My doctors at first refused to give me that test. It became a game of who blinked first. (My Dutch last name should have given them a clue of who they were dealing with.) Eventually they gave in, and after that test came back negative they finally admitted that it was actually more accurate than a colonoscopy. Yet, doctors are still pushing expensive invasive colonoscopies as the only route to take.

I was told by a reputable cardiologist that I needed a preventative procedure. I knew that fluorescein was used in that procedure and I am allergic to it, so I told him. He said that he would use something else. He used fluorescein anyway, and I developed kidney damage from it, so needed to go on dialysis years later.

Pharmaceuticals are another huge problem. The pharmaceutical industry, which sponsored opiate addiction and fatal overdose through lying about the affects of their drugs like OxyContin (and convinced doctors to also lie) are spinning out a dizzying array of drugs to treat everything imaginable (even things you didn’t know were a problem, like occasional sadness). Since they lied about fatal side effects of opiates even after a tragic number of young people started dying, don’t you think they would not hesitate to lie about the effects and side-effects of other drugs? Yet, your doctor is likely getting most of their medical education these days from slick, sharply dressed salespeople who bribe them with gifts and even Maui vacations (disguised as medical conferences). By the way, there is significant research showing that sugar pills are just as effective at treating depression as SSRI’s. Save a little money and buy Tic Tacs if you are feeling down. Better yet, buy chocolate-coated coffee beans. Those do have a significant effect on mood.

I have spoken to numerous people whose doctors lied to them about the side effects of medications, and these people have ended up with terrible disabilities. I have had two recent incidences of doctors telling me that a drug they were prescribing was completely safe for me. I ended up doing my own research and found that these drugs can cause kidney damage (I am on dialysis); so I refused to take them. In in one case I had to change specialists because the doctor was so angry with me for not taking the drug. By the way, the drugs in both cases were not even to treat any symptom I was having, but it had been shown in “some studies” to “possibly prevent” problems down the line. Well, I guess it would have prevented further problems from developing down-the-line, because I would have been dead from the kidney disease that it had worsened.

Be assertive with your doctor. They do not necessarily have your best interest at heart and may not be paying close attention to you. Do your homework. Read the information provided in writing by the pharmacy with your prescriptions, or go online. Do not rely on whatever any medical or pharmaceutical professional tells you. Get a second or third opinion for any diagnosis you are given. I have been saved from very high-risk, completely unnecessary surgeries this way. Assign a medical power of attorney who agrees with you and who is assertive, in case you are unable to make your own medical decisions.

I respect many of my medical specialists; and there are many medical professionals who are ethical. They are necessary in our lives; but increasingly we are going to be responsible for our own safety when it comes to the diagnosis, testing and treatment of our medical conditions.

I inform my specialists early on that I am going to be assertive with them, and that I take it as a compliment to be called a difficult patient. Be a “difficult patient.”

                 Christopher Knippers, Ph.D.,     09/19/2019