scolding doctor

The phrase “doctor’s orders” often means doing something because a physician says to do it. These days that usually that means swallow a certain pill.

Noncompliance or Nonadherence?

Doctors have a name for people who don’t follow doctor’s orders or take their medicines as prescribed: “noncompliant.” This makes patients sound like disobedient children. You can almost imagine a frustrated parent scolding a rebellious child for not eating her peas.

If someone resists taking a specific drug, the medical record may reflect the discord with a notation “patient refuses to take medication X.” This creates the image of a problem patient willfully disregarding the wise doctor’s thoughtful advice.

In an attempt to avoid the unpleasant image of a condescending parent-child relationship, some health professionals have taken to using the term “nonadherence” instead of noncompliance. It still smacks of paternalism.

Why Don’t People Take Their Pills?

Why do some people fail to take their medicine as the doctor prescribed? Many people have reasons, often good ones.

In some cases it can be challenging to follow instructions as written. We recently heard from a woman who decided that taking her thyroid medicine, levothyroxine, an hour before coffee or breakfast was unacceptable. Skipping her morning coffee was a nonstarter.

Instead, she discovered that she could take the pill at bedtime. This was not what the doctor originally “ordered” but it was a reasonable compromise.

“Minor” Side Effects Can Create Chaos:

In other cases, a patient may discover that a “minor” side effect has an unacceptable impact on quality of life. Sometimes this is a cough caused by a blood pressure pill:

“I was first prescribed Zestril (lisinopril) for hypertension about 12 years ago. I developed a constant barking cough. My doctor never mentioned that it was a common side effect. When I found this out, I stopped taking the pill.”

The physician doesn’t always acknowledge the adverse effect. Another person wrote:

“My doctor prescribed a statin that I took for five months before realizing the debilitating aches and pains were from this cholesterol-lowering drug. She told me I had arthritis, but after only one week of not taking the statin I felt so much better.”

Diane in Texas was fired by her cardiologist:

“At the young age of 69, I was fired by a cardiologist because I, ‘respectfully declined’ to take statins. I explained that what I had read about them made me uncomfortable. My cholesterol levels were borderline. I passed my treadmill stress test with flying colors. There is no family history of heart disease either.

“The cardiologist was pleasant and told me she was releasing me back to my primary care physician. She told me to stay on a heart healthy diet. Next time I saw my PCP we talked and she agreed that it was my choice. That is why I love her and pay out of network to see her!”

This reader was not fully informed of side effects:

Seroquel (quetiapine) left me vegetative for a short time. I was not warned about the bizarre side effects. I can’t remember much of what happened, obviously! Why don’t doctors take their patients’ concerns seriously?”

One reader got into trouble with her doctor over a drug for osteoporosis prevention:

“I took myself off Actonel (risedronate) because I didn’t like the way it made me feel. I also read about the side effects and decided that since it is my body, I have a right to determine what goes into it and what does not. Apparently not. My gynecologist yelled at me.”

Barbara in New York did not want a “biologic” for RA (rheumatoid arthritis):

“After 3.5 years seeing a rheumatologist she ‘fired’ me because I didn’t want to start taking a biologic medicine. I explained my reasons and felt it was my choice. I had already been on the chemo drug methotrexate along with prednisone all that time.

“I went to a second rheumatologist for 1.2 years who said she’d never try to force me to take any medication. That ended when she also failed to get me on a biologic and she also let me go.

“Both doctors talked to me like I was a recalcitrant child even though they both reported to my PCP that I was a very lovely lady. One called me “Trouble” when I declined to take the biologic. I have always been a respectful patient and never had a problem with any other doctors. My PCP of 40 years was disgusted when he learned of this.

“I have rheumatoid arthritis and am in my 23rd year with it. I no longer see a rheumatologist as I’ve been told none exist that will work with a patient who doesn’t do exactly as they say. I have valid reasons for not wanting to try a biologic. My position should be respected.”

Barbara has a right to refuse “biologics” like adalimumab (Humira), etanercept (Enbrel), infliximab (Remicade), rituximab (Rituxan) or tofacitinib (Xeljanz). Biologics are genetically engineered medications and target proteins within the immune system. Most are injected, though Xeljanz is an exception to that rule.

By altering cells within the immune system there are some disconcerting side effects. The body may not be able to resist infections the way it normally does. People with latent Hepatitis B may experience a reactivation of the condition. Allergic reactions may include itchiness, redness and shortness of breath. Some biologics can affect the heart. Be wary of symptoms such as swelling of hands, feet or ankles.

The FDA has a black box warning for Xeljanz:

“Patients treated with XELJANZ/XELJANZ XR are at increased risk for developing serious infections that may lead to hospitalization or death…”

“Reported infections include:

  • Active tuberculosis, which may present with pulmonary or extrapulmonary disease. Patients should be tested for latent tuberculosis before XELJANZ/XELJANZ XR use and during therapy. Treatment for latent infection should be initiated prior to XELJANZ/XELJANZ XR use.
  • Invasive fungal infections, including cryptococcosis and pneumocystosis. Patients with invasive fungal infections may present with disseminated, rather than localized, disease.
  • Bacterial, viral, and other infections due to opportunistic pathogens.

MALIGNANCIES

“Lymphoma and other malignancies have been observed in patients treated with XELJANZ…”

Other biologics for RA have somewhat similar warnings. Patients should not be “fired” if they choose to avoid a certain class of medication.

Doing Your Homework:

“I was prescribed Cipro (ciprofloxacin) three times. Each time my reaction was extreme. Just one pill caused dizziness, strange feelings and panic within 10 minutes. When I complained, the doctor became defensive and said I was imagining the symptoms.

“I was also prescribed medicine for urinary incontinence. The medication made me dizzy enough to fall twice. I have had two knee replacements and cannot afford to fall. Now I look up every prescription before going to the pharmacy.”

Participatory Medicine Means a Partnership:

Patients deserve to be treated as equal partners in their health care. Physicians should try to address their concerns. Shared decision making is key to this approach. That requires transparency and respect on both sides of the stethoscope.

Let’s do away with the phrase doctor’s orders. It comes from a bygone era when doctors could demand that the patient take whatever was suggested without question.

That is how we ended up with hormone replacement therapy (HRT) in the form of Premarin being the number one most prescribed treatment in America. It was also a source of contention between may physicians and their female patients.

To learn more about your rights as a patient and what questions to ask we offer our book on this topic:

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  1. Donna
    New England
    Reply

    My eye doctor prescribed Restasis. I was having double vision in my left eye, he said low tear coverage could be the problem. He also gave me a stronger lens prescription. I use the restasis for 5 days, but stopped because I felt so weird, almost like the flu, but only in my head. Runny nose, sneezing, headache.

    Then the next day my jaw hurt so bad, I thought I would cry. Within a week, I still had the sneezing, drippy nose, sore jaw, which I think was swollen gums, because I also had a swollen tongue and mouth, could not help biting my cheeks, could barely chew, and my headache was like a face ache (swollen face!). Called the eye doctor, his tech asst said I should go to my medical doctor first, couldn’t get in for two weeks, symptoms subsiding, but still really uncomfortable.

    By this time, I did the dreaded Dr Internet and found that Restasis is cyclosporine, and a severe allergic reaction includes my symptoms. This is not on the Restasis site, but is on WebMD. PCP basically threw out my self diagnosis, I do have white coat hypertension, but now he wants a complete cardiac work up, bone density test, blood work, mammogram, and colonoscopy (I am a new patient to him), and I have to bring my home cuff to the office to prove that it works. I will go back, but only to ask him one more time what happened to me, if I can’t get an answer, he can keep his tests and I’ll find another doctor.

    I stopped using the Restasis, 40 days later, I’m still having trouble chewing but feeling almost normal again. No wonder I don’t take any drugs, half of them you don’t need, the other half don’t work!

  2. Cindy M. Black
    Seattle, WA
    Reply

    After having worked in the medical field in one capacity or another for most of my life and having worked around doctors of all “sizes” and stripes…. I can only say that I RARELY IF EVER even CONSIDER taking doctors’ advice. I might figure it in when making decisions, but I never treat it as gospel.
    The doctors I’ve worked with, all excellent, are nevertheless primadonnas. They’re so used to people gravitating around them and hanging on their every word that they’re not in very good touch with reality. Also they only know THEIR specialty. Ask them about vitamin C, for example and they’re at sea re the C. And even if they did know, they wouldn’t tell you if it wasn’t in their specialty; they’re too afraid of legal repercussions. Lastly, they’re so busy they rarely get to “know” a given patient well enough to be sure their treatment was the best thing for him/her.
    At best, I treat “doctor’s advice” like the way I get information in a foreign country where I don’t speak the language. I ask about 20 people, then combine all the vocal inflections and body language, and I usually find the way.

  3. S Russell
    NC
    Reply

    I totally understand that a physician has gone to medical school and earned their degree of doctorate and I respect that. However, they see many patients a day and try to make them all fit into a circle mold when some of our bodies and physiologies are square. If we pay enough attention to our bodies and research the drugs they are trying to prescribe to us, then I feel that I am capable of determining if this drug is something that I want my body to possibly experience the side effects. Ultimately, it IS my life, my side effects, and I believe that we, as a human race, was able to manage conditions in a natural way for MANY years before pharmaceutical companies existed!

  4. Mary Jane
    NYC
    Reply

    I think it is important to choose doctors who seek out non-mainstream methods, and they’re hard to find. I understand that “doctor” comes from the same root as “teacher,” as in “doctrine.” If my doctor is not teaching me, I’m not interested in continuing with that doctor.

  5. Lyn
    Puget Sound, WA
    Reply

    I completed a certified course in Bioethics from Georgetown U in WA D.C., and much of what you say is actually illegal. MD’s can’t “fire” people, although the patient is better off finding a health care provider who will work with them to find the proper medication. Paternalism is rampant, and I see it not only in male MD’s, but in female MD’s, also.

    If a patient is uncomfortable with taking a medication, he/she shouldn’t blindly follow the Drs. orders. There are good Web sites such as the NIH, Mayo Clinic, CDC and others that will inform patients of the side effects of meds, and then weighing the positives and negatives of the effects for the patient’s particular situation , what is best for you and your body, is possible.

    Drs. are people, not experts in every procedure and medication, and so it’s best to do your research – ask your pharmacist his/her opinion, and not blindly follow “Drs. Orders.”

  6. vitdweeb
    Reply

    I tell people to fire their doctor if they insist on harmful medications like statins.

  7. Meris
    Geneva
    Reply

    Recently, I consulted an ORL for a respiratory infection. He prescribed drugs ($180 worth) and an appointment in one month’s time. The condition worsened: violent non-stop coughing. I called his office. His secretary told me to keep taking the drugs. One week later, I was able to get an appointment.

    He ordered a chest x-ray: result – normal. He prescribed another $100 of drugs, including antibiotics, never asking me about my allergies nor noting the name of the antibiotic in my file. The condition had not improved when I saw him 6 days later. He ordered a sinus x-ray and more drugs (costing $200) and asked to see me in 16 days. At that point, I refused the x-ray and taking a cortisone-based spray as it worsened the cough, and told him I wanted to see another doctor. He was furious. The ORL had been treating me as a nose and a throat.

    The ORL referred me to a pulmonary specialist, never sending him details of my treatment. The latter prescribed only salt water for chronic rhinitis. He treated me like a human being. I am finally getting better.

  8. Frances
    TX
    Reply

    I have always been cavileer about “side effects,” indeed, I did many drug studies for pharmaceutical companies introducing new drugs or testing dosages for years. But a Cipro prescription following another high intensity antibiotic prescription for a UTI that had no detectable symptoms had the potential to cripple me.

    The first one exacerbated a sports injury on my knee tendons and I could barely walk while on it. So I researched the side effects of the Cipro and found even worse reports. One woman became crippled and 149 patient reviewers complained bitterly about it and said nothing positive. So I became one of those “noncompliant” patients. My doctor simply told me to try to stay healthy and come back in three months. I’m taking no prescribed drugs.

    Since I went vegan five years ago I have had no illnesses. Many of the physical complaints my friends report are likely food related. I trust my immune system to keep most things at bay. I chose to not cripple my immunity with antibiotics over a UTI without discernible symptoms, and possibly permanently damage my knee tendons.

  9. Laura Marie M
    Reply

    There is a God, and doctors are not Him.

  10. Mary
    Los Angeles
    Reply

    It seems like every time I see my PCP, he recommends some sort of prescription. Upon occasion I have taken these, usually with adverse affects. I am now looking to see in osteopath doctor to see about integrating my entire health instead of getting a prescription to fix something.

    So far I am not on any prescription medications. And I feel pretty good.

  11. Chris
    Reply

    Thinking of you. Hope you have a better day today. I will call you tonight. Love, Joanna

  12. Michael
    Washington
    Reply

    I was prescribed Effexor to help me sleep. I took the starter package home and started it as instructed. I started feeling stupid and slow, and on the 4th day I took over 4 minutes to decide which shoe to put on first. I dumped the remainder of the package and fired the neurologist.

  13. Margaret
    Sedona AZ
    Reply

    Constantly have to change primaries as they all seem to move away, or I move. I am always very upfront with each new one if they mention a bone density test. I tell them don’t bother because whatever you may prescribe if the test is negative I would not take anyway.

    So far they have all respected this, and no one has “fired” me yet”.

  14. Francine
    Reply

    It concerns me to have medications injected into the body. At least taking a pill, you can stop it if you have an adverse reaction or undesirable side effect. Once a drug is injected, you are basically screwed. You could have to live with something you did not want for months or suffer some permanent damage. This is a concept that freaks me out.

  15. CW
    Plano, TX
    Reply

    Ah yes, my neurologist and I have decided to part ways, (actually it is a blessing in disguise, as I have been thinking it is time for a change). The doctor focuses on what I do not do (good reasons for noncompliance), and not what we can do together.

  16. Kathy ehnet
    Harwick pa
    Reply

    Actonel boniva now prolia orthopedic surgeon says makes bones worse , still using life threatening mesh for pelvic prolapse think they want you ill

  17. Tyler
    Pt Pleasant NJ
    Reply

    I take everything doctors say with a grain of salt. Even though most of them want everyone to avoid salt! Despite numerous studies that show low salt diets have adverse effects on health. People assume doctors know everything. They don’t, they just think they do. Too many have a “God complex” and want to control people’s lives. The best thing you can do is be knowledgeable about your medical condition & don’t take what your doctor says as “gospel”. Be an informed patient. Question everything they tell you.

  18. Sarah
    N. Carolina
    Reply

    I believe that patients have a right to participate in their healthcare which means they have to educate themselves. I got off of HCTZ because of tremors and am taking Lasix q/day – much better results. Working with my primary I am weaning myself off of an antidepressant and am thankful that he, at least understands my need to participate. Medicine has dramatically changed and not always to the benefit of the patient so it is up to us to challenge and if an OD or MD feels threatened, find another doctor! It is my belief they work for me not Me for them.

  19. SuzieQue
    NC
    Reply

    I was “yelled at” by a doctor when I declined HRT. It was told that it would prevent a heart attack. I was told by another that I didn’t need to come back if I didn’t have a mammogram and colonoscopy. I’ve also declined statins. By another doctor, I was given Dulera which made my lower legs tingly and Advair which gave me rapid and irregular heartbeat. I don’t believe I need either of them. They are expensive and have life-threatening side effects. Actually I’m not sick. I had the flu. Now I get a flu shot every year.

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